## 1. Informational Privacy



This section will highlight philosophical issues relating to
informational privacy and medicine. In medical contexts, the
"privacy" at issue is very often
"confidentiality" (DeCew 2000). Health care professionals
acknowledge ethical duties to keep medical information private (APA
2017; AAMFT 2015). Physicians, nurses, hospitals, pharmacists, and
insurers are required by law and professional codes to practice
confidentiality. Since the 1990s, in policy discussions of health
policy and reform, concerns about confidentiality have often been
prominent (Sharpe 2005; Schwartz 1995). Confidentiality practices
remain salient in medical settings, even as members of the general
public display more relaxed attitudes about voluntarily sharing health
and medical information. 



A few preliminary points about informational privacy and medicine bear
emphasis at the start--one about public attitudes, a second about
professional responsibility, a third about law and policy, and a
fourth about the significance of disparities and big data analytics to
meaningful medical privacy.



First, while information-sharing has grown more common in recent
decades--due, *inter alia,* to social media, big data,
precision medicine, and increased infectious disease, new drug
marketing and other health surveillance--individuals commonly
keep some health concerns to themselves, whether out of personal
preference, ethical reserve, etiquette, fear or shame (Allen 2016;
Rosenberg 2000; Buss 1980; Westin 1967). When they share what they
consider sensitive health concerns with others, most individuals
employ culturally appropriate discretion and reserve (Nissenbaum 2009;
Goffman 1959, 1963). Because of such privacy practices, families,
friends, employers, employees, co-workers, doctors, researchers and
governments may not acquire all the medical information they want,
when they want it (Currie 2005; Etzioni 2000). At the same time,
individuals who want medical privacy may feel they lack meaningful
control over what happens to their personal information. The rise of
social media, smart phones, wearable health monitoring devices,
personal possession of electronic copies of medical records, consumer
DNA testing and precision medicine represent diverse opportunities for
intended and unintended disclosures of health-related images and
information. The practical ability of individuals to control and
protect their health privacy is partly a function of effective data
security, their knowledge of contemporary medical data management
practices and social-economic privileges (Bridges 2017; Marx 2007).
Children, along with adults in active military service, judged
mentally incompetent, dependent on government entitlement programs or
incarcerated, lack substantial control over their medical privacy
(Annas et al. 2013). In the context of medical emergencies, infections
diseases and epidemics, competent adult civilians not in custody may
be denied the choice to keep their medical information private. 



Second, many medical professionals, hospitals, insurers and other
entities with access to health information regard maintaining the
confidentiality of medical communications and the security of medical
information as paramount professional responsibilities (Daly et al.,
2015; Presidential Commission 2016). This sensibility extends to
social work, mental health and pharmacy records. Moreover, clinical
health care providers and bio-medical researchers generally seek to
accommodate patients' reasonable expectations of privacy and are
required to do so by state and national laws (Allen 2011; Presidential
Commission 2009). That said, encouraging patients to embrace sharing
health information to improve research, clinical practices and their
own care is an emergent trend (Juengst et al. 2016).



Third, societies impose major privacy and private choice-related legal
obligations on their members (Waldman 2018; Allen 2016; Westin 1967).
Legal obligations of privacy and confidentiality bind persons and also
bind health care providers, insurers, health-data processors, health
researchers, public health officials and government (Mello at al.
2016; DHHS 2015; GAO 2001). Thus in a number of legal systems,
disclosing a private medical fact or breaching medical confidentiality
can result in civil liability (Allen and Rotenberg 2016; Solove 2004,
2008). The law imposes obligations to respect informational privacy
(e.g., confidentiality, anonymity, secrecy and data security);
physical privacy (e.g., modesty and bodily integrity); associational
privacy (e.g., intimate sharing of death, illness and recovery);
proprietary privacy (e.g., self ownership and control over personal
identifiers, genetic data, and biospecimens); and decisional privacy
(e.g., autonomy and choice in medical decision-making) (Allen 2016).
Yet privacy is not everything in the eyes of the law, nor is it a
sufficient or absolute ethical good (Allen 2003). In the context of
emergencies and public health crises, such as the COVID-19 global
pandemic, symptom checking, disclosures, surveillance and contact
tracing that diminish privacy may be encouraged and legally permitted
or mandated. The desire of health officials and researchers for health
data concerning chronic health problems, such as diabetes, hepatitis
and drug addiction, has prompted them to seek or legally obtain
otherwise confidential health records.



Fourth, the traditional emphasis in academic and policy discussions of
privacy on informed consent and choice grounded in individual freedom,
can neglect the ways in which health disparities and societies'
structural injustices contribute to poor health, constrain choice and
reduce opportunity (Skinner-Thompson, 2021; Obasagie and Darnovsky
2018; Shepherd and Wilson 2018; Bridges 2017). Moreover, the rise of
big data and artificial intelligence in the digital economy have made
it increasingly difficult for any individual to exercise meaningful
control over the collection, manipulation and use of medically-related
and other personal information about them (Kasperbauer 2020; Velez,
2020; Allen 2016; Cato et al. 2016; van der Sloot 2017).


### 1.1 Confidentiality



"Privacy" in medicine often denotes the confidentiality of
patient-provider encounters (including the very fact that an encounter
has taken place), along with the secrecy and security of information
memorialized in physical, digital, electronic and graphic records
created as a consequence of patient-provider encounters (DeCew 2000;
Parent 1983). Confidentiality is defined as restricting information to
persons belonging to a set of specifically authorized recipients
(Allen 1997; Kenny 1982). Confidentiality can be achieved through
professional silence and secure data management (Sharpe 2005; Baer et
al. 2002). Hence Sissela Bok characterized confidentiality as
referring "to the boundaries surrounding shared secrets and to
the process of guarding these boundaries" (Bok 1982: 119). 



Philosophers have suggested new ways of conceptualizing familiar
privacy and confidentiality issues, pushing the topic of privacy and
medicine into less traveled directions or novel frames. For example,
it has been proposed that privacy and confidentiality in medical
practice eschew the traditional imperative of individual patient
autonomy in favor of a relational understanding that welcomes families
and support networks into a confidential circle with patients and
caregivers (Mohapatra and Wiley 2020). It has been proposed that
traditional physician-patient confidentiality laws should be
understood to impose potentially unwanted secrecy onto physicians, who
bear burdens of silence they might prefer not to bear but are in
effect coerced to bear by legal liability to do so (Allen, 2011). 



Philosophers tend to agree that health is a vital component of human
flourishing (Faden et al. 2013; Moore 2005; Rossler 2004;
Rosenberg 2000; Schoeman 1984; Boone 1983). Maimonides maintained that
bodily health is among the means and ends of a good life (Weiss 1991).
Modern philosophers generally hold that a just society will be
committed to securing the material and political bases of public
health (Powers and Faden 2008). Philosophers of medicine, ethicists
and bioethicists tend to agree that, with a handful of exceptions,
respecting patient confidentiality benefits both individual and public
health (Kamoie and Hodge 2004). They defend the practice of
confidentiality by diverse appeals to utility, dignity and virtue
(Easter et al. 2004).



Building on the 5th century BCE Hippocratic tradition of
medical caregiver secrecy, western philosophers defend confidentiality
on several utilitarian or other consequentialist grounds (Frey 2000;
Hare 1993; Freedman 1978). They argue that preventive medicine, early
diagnosis and treatment save human lives and money. Individuals will
be more inclined to get medical attention if they believe they can do
so privately. Policy experts maintain that the cost of health care and
insurance would be considerably higher if people avoided routine
check-ups and prompt medical attention because confidentiality was not
credibly promised (Fairchild et al. 2007a). Confidentiality practices
are believed to promote both seeking care and frank disclosures of
health concerns in the context of care. Symptoms of illness and
decline, such as incontinence, memory loss, or hallucinations can be
embarrassing to talk about, even with sympathetic professional
clinicians. In addition, promises of confidentiality can make persons
more willing to participate in health research (Presidential
Commission 2012; Easter et al. 2004).



Medical confidentiality promotes the individual's medical
autonomy, by sheltering those seeking morally controversial medical
care from outside criticism and interference with decisions (Dworkin
et al. 2007; Englehardt 2000a; Feinberg 1983). Patients seeking
cosmetic, abortion or fertility treatments might not wish others to
know their plans. Members of the general public have from time to time
attempted to influence choices strangers make relating to the care of
disabled infants, comatose or brain dead kin, and abortions. Spouses,
partners, parents and siblings have sought involvement, with arguably
greater moral warrant. H.J. McCloskey suggested that loving personal
relationships call for mutual accountability (McCloskey 1971). Of
course some health problems--morbid obesity, scoliosis,
psoriasis, paralysis--simply cannot be concealed from intimates.
Bioethicists, consistent with public health considerations and laws,
commonly argue that hidden contagious conditions or exposures should
not be concealed from vulnerable associates and in extreme cases could
justify non-voluntary isolation or public health quarantine
(Presidential Commission 2015a).



Philosophers have also offered deontological grounds for protecting
informational privacy (Pierce 2018; Benn 1988). Centuries of
philosophical thought depict human beings as vulnerable bodies and
self-aware souls (Lackoff and Johnson 1999). Informational privacy
promotes respect for human dignity, philosophers have said. Caregivers
display concern for moral persons with rational interests and feelings
of their own when they keep information about their health and health
needs private (Freedman 1978).



Individuals concerned about discrimination, shame or stigma have an
interest in controlling the flow of information about their health,
and arguably the moral right to do so. Mental and other behavioral
health care consumers continue to face stigma and discrimination in a
world in which getting what they need requires a virtual surrender of
confidentiality to a bevy of other people, including family members,
doctors, social workers, teachers, hospitals, insurers, and law
enforcement (APA 2002; AAMFT 2001; Dickson 1998).



Notions of moral fairness play into arguments for confidentiality.
Confidentiality is arguably required by fair relations with government
and businesses (Workplace Fairness, 2009,
 Other Internet Resources).
 Since "knowledge is power", special concerns have been
raised about the manner in which government collects and manages
personal medical information. Pervasive ideals of fair information
practices require that personal data collected about individuals be
limited, accurate, secure and disclosed to third-parties only with
consent. Some patients believe they own personal information about
themselves, and that is it only fair that they, not others, control
its release (McGuire 2019). They may believe they own medical
information because they have purchased medical services (Martin 1981:
624-25). Or they may believe they own medical information,
especially genetic information, because it reveals information of a
highly personal and unique sort (Laurie 2002; Rothstein 1997).



Philosophers have identified duties of welfare promotion, care,
dignity and fairness to support the case for privacy and
confidentiality (Schoeman 1984). Virtue ethics suggests its own set of
grounds for informational privacy in health care (van der Sloot 2017).
Jennifer Radden has argued that the special vulnerability of mental
health patients and the stigma attached to their problems turns
confidentiality into a particular brand of excellence for mental
health care practitioners (Radden 2004). She has argued that the
demand for confidentiality in psychiatric medicine is inadequately
accounted for on theories that fail to take into account the virtues
of trust and reserve that are hallmarks of mental health care. Ari
Ezra Waldman has also defended trust as a critical virtue for
understanding the normative grounds of informational privacies.
(Waldman 2018)



In the context of health research, ethics committees and institutional
review boards impose ethical obligations on researchers to protect the
confidentiality of research subjects and their medical information
(Fisher 2006; Hiatt 2003; IOM 2000). The obligation of confidentiality
may require the use of "identifiers" rather than names or
"de-identification" procedures such as data aggregation
(Presidential Commission 2012). Researchers may need to publish
genomic data in ways calculated to obscure the identities of whole
families. Patient confidentiality can be compromised in the setting of
medical lectures and ground rounds, and in the publication and
archiving of medical lectures, scholarly articles and personal papers.
The question of whether there are privacy concerns when only
statistical use is made of individuals' health data has arisen.
It has been argued that individuals have an interest in the uses to
which data sets that include their data is put, even if they are not
personally identified by researchers (Newcombe 1994).



Privacy theorists caution that deprivation of privacy can amount to
subordination, injustice and inhumanity (Skinner-Thompson 2020; Gandy
1993). Most privacy theorists focus on the harms that stem from
invading the privacy people value. Theorists have begun also to
consider the harms that stem from voluntary self-disclosure (Allen
2011). Individuals freely disclose medical and other sensitive
information about themselves. They do it in published memoirs, in
social media postings and in forums devoted to illnesses, medical
procedures, prescription medications, and alternative medicine. Women
have webcast childbirth and mastectomy, citing public health education
goals (Allen 2000).



Privacy is not defended as an absolute good (Hixson 1987; Boone 1983;
Louch 1982; Pennock and Chapman 1971; Negley 1966). Confidentiality,
for example, is seldom described as an absolute good in health care
(Bok 1982). Philosophers justifiably recommend major exceptions to the
practice of confidentiality. First, all health care providers and
responsible adults should be obligated to report evidence of abuse or
neglect of minor children, such as unexplained fractures and
malnutrition, even if the privacy interests of the children and/or
their abusers would seem to suggest otherwise (Dickson 1998). Failure
of medical workers to promptly disclose can have deadly consequences
for vulnerable minors. While confidentiality decisions are left to
individuals or their guardians in most instances, minor children are a
defensible exception due to their undeveloped cognitive and moral
capacities and due to the possibility that their guardians are abusers
who would benefit from confidentiality. Second, enshrined in American
law as the Tarasoff Rule, mental health providers have an ethical duty
to warn police or potential victims of mentally ill patients'
violent imminent intentions (Gates and Arons 1999). These two
exceptions reflect a belief that avoiding physical injury to third
parties is more important than invariably deferring to patients'
preferences, sparing their feelings and preserving their trust in
relationships. Important philosophical questions arise about the
extent of "Good Samaritan" duties, whistle-blowing
obligations and the duty to warn in health care settings. Ascribing
such duties potentially infringes the liberty persons otherwise enjoy
to act and refrain from acting as they see fit so long as they do not
affirmatively harm others. Arguably the person who declines to help or
warn is not the responsible cause of the abuse and violence that
befalls others. Yet beneficence argues for low risk, low cost
interventions to prevent serious harm.



Third, there may be situations in which medical confidentiality should
not be protected because the public has a right to know. One category
of information which the public or public health officials are
commonly thought to have a right to know is information about
instances of highly infectious contagious diseases with high rates of
mortality and morbidity, such as ebola, COVID-19, HIV/AIDS, hepatitis
and measles. Another category of information deemed not suitable for
confidentiality is information the media has a right to publish as a
matter of its newsworthiness. Dramatic medical rescues of automobile
accident victims are understandably newsworthy events. It has been
argued that the public has a right to know about public
officials' serious medical problems, perhaps more than
authorities have typically disclosed (Robins and Rothschild 1988;
Thompson 1987). In the United States, plaintiffs in personal injury
lawsuits are asked to submit to medical examination; and lawyers and
grand juries have the authority to subpoena medical information for
use in legal proceedings and investigations, placing highly sensitive
medical information at risk of public disclosure (Wolf and Zandecki
2006). Like the demands of public health surveillance, legal process
demands argue against unqualified rights of medical confidentiality
(El Emam and Moher 2013).


### 1.2 Secrecy



Sissela Bok defined secrecy as intentional concealment (Bok 1982).
Patients and caregivers can promote privacy through secrecy. Secrecy
practices loom large in health care. Some people do not share the
knowledge of medical symptoms even with their closest friends and
family members. A person may secretly know he or she is ill before he
or she admits it to family members or consults a physician. Reluctance
to share knowledge of medical symptoms with associates or kin and
medical professionals may stem from fear of disability or death;
avoidance of discrimination in insurance, employment and education; or
dread of social stigma, shame, embarrassment or rejection. In the
1990s, questions arose about the obligations of dentists and other
health care providers to refrain from secrecy and disclose their HIV
positive status to patients. Fertility patients may want to conceal
the use of donated sperm or eggs, due to the social and religious
consequences of disclosure (Birenbaum-Carmeli et al. 2008). Few
medical conditions or procedures are shrouded in total secrecy
anymore. Yet, people may prefer to keep secret the fact of, for
example, their elective cosmetic procedures, weight loss surgery, sex
reassignment surgery, abortions, fertility treatments, and
sterilizations.



Paternalistically withholding medical knowledge from patients as the
secrets of doctors, healthy spouses and adult children pits ideals of
beneficence in caregiving against the patient's right to know.
Paternalistic secrecy is a major feature of medical practice, more
prevalent in some countries, communities and families than others.
Moral ideals of autonomy and agency argue for informing patients of
their medical conditions, truthfully and fully. Yet, medical news is
sometimes deliberately kept from patients. The adult children of a 95
year old woman might think it unduly cruel to reveal the diagnosis of
operable bowel cancer when she would be better able to cope with the
fib that she has benign diverticulitis. The parents of a young child
might think it kind-hearted to conceal his terminal leukemia from him,
on the ground that he is too young to understand death. Some moralists
would agree. Yet if deception is categorically wrong, then secrecy
about medical adversity would surely be unethical. A related issue is
how medical clinicians and researchers should deal with
"incidental and secondary findings": disclose to the
subject, or keep confidential within the research team? The return of
incidental findings may create undue worry and increase medical costs
by prompting unnecessary medical visits and testing, but the
overriding obligation may be to anticipate incidental and secondary
findings and communicate them with care (Presidential Commission
2013).



There is no guarantee that patients will believe medical truths or
diagnoses squarely placed before them by qualified physicians. Denial
of unpleasant truths is commonplace. Self-deception about health is a
powerful phenomenon. Some people sincerely believe refusing to accept
an unwanted diagnosis by maintaining a positive attitude will shield
them from medical catastrophe. Mental disorders can trick one into
thinking one is well, happy and insightful, rather than the manic,
delusional person the psychiatrist may diagnose.



Another kind of secrecy practiced in medicine is the concealment of
surgical wounds and scars. Cosmetic surgeons hide scars inside
hairlines and in the creases behind the ears. Breast cancer is no
longer the cause for secrecy it once was, yet reconstruction surgery
following mastectomy is a kind of concealment. The lure of minimally
invasive laparoscopic surgery is not only that it may both reduce the
length of hospital stays and the risk of infection, but also that it
leaves less prominent and visible scars. Advances in medical
imagining, such as the X-ray, MRI, CT scan and ultrasound, allow
providers to enter the body and capture information without leaving
tell-tale signs of having done so.



Neuroimaging, brain imagining technologies (BIT) generally, and
advanced lie-detection raise critical questions about whether secret
thoughts should be available for discernment, and if so under what
circumstances (Presidential Commission 2014; Farahany 2012). The issue
is one of coerced self-disclosure and, if someday criminal guilt could
be reliably discerned from imaging, self-incrimination.


### 1.3 Data Protection and Security



The moral significance attached to medical privacy is reflected in
data protection and security laws adopted by local and national
authorities around the world. The point of these laws is to regulate
the collection, quality, storing, sharing and retention of health
data, including the electronic health record (EHR) (CDT 2009, in
 Other Internet Resources).
 Health privacy statutes limit disclosure in the absence of informed
consent; but typical statutes recognize numerous exceptions for
routine uses, research, public health reporting, and legal process and
law enforcement. The policy consensus seems to be that, while medical
privacy is important, patients' medical information may be
disclosed to third-parties for socially important purposes unrelated
to their own care. Electronically stored and produced medical
information is by its very nature mobile. Those with access can
transmit EHR data across town or across state and national borders.
Patients today have unprecedented access to their own health
information. Patients may transmit medical data over email, entrust it
to third party cloud data storage providers, or collect health data
via apps and wearable devices with little attention to third part
access and use.



Some jurisdictions have special rules for management of certain health
information. Data regarding HIV/AIDS, mental health and genetics are
afforded special treatment in U.S. law, for example. Philosophers
ponder whether particular conditions merit such exceptionalism. The
argument for HIV/AIDS exceptionalism recalls the early days of the
global epidemic when knowledge of the illness was poor, treatment was
ineffective, and social stigma attached to affliction. The argument
for mental health exceptionalism is that patients do and must
"bare their souls" to mental and behavioral health
providers, making disclosures socially costly (Radden 2004). A U.S.
federal statute prohibits basing employment or health insurance
decisions on information about a person's DNA or genetic
predispositions (GINA 2008). The leading argument for genetic data
exceptionalism appears to be that genetic data conveys uniquely
detailed information about a person and her biological family,
information a person might have a right to know or a right not to know
(Chadwick et al. 2014). Some genetic information can foretell a
person's health future (Laurie 2002; Rothstein 1997).



The use of electronic technology has been described as a boon for
health care delivery and administration for decades (Burton 2004;
National Research Council 1991). Yet heightened concerns for privacy
followed increased portability of health data mandated by law (HIPAA
1996) and third-party ("cloud") data storage. The
obligation to protect medical data held by the state or private
companies has taken on a new urgency as more and more health data is
being transmitted and stored electronically. It has been argued that
information managers owe it to the public to take stringent measures
to prevent data breaches and to appropriately respond and remediate
when a breach occurs. A data breach can result from the theft of a
laptop; fraudulent or accidental access to data; sabotage by dishonest
or disgruntled employees; or the loss of data storage devices. Major
hospitals, health agencies and insurers have experienced highly
publicized data breaches affecting millions of consumers whose names,
addresses, health identification numbers and other data were
compromised (Seh et al. 2020). A philosophical question raised by data
breaches is how to define and morally repair harm. Medical identity
theft and public disclosure of private facts are generally regarded as
"harms" (Biegelman 2009). But it has been argued that
negligently causing increased risks of identity theft and public
disclosure of private facts are harms, too. If risk amplification is
harm, though, it is unclear what should count as fair compensation or
moral repair. 


### 1.4 Anonymity



Anonymity has value in a variety of public health and medical research
contexts. Research publications commonly shield the identities of
biomedical research subjects or clinical patients. Special attention
is paid to genetic information. Although a number of prominent
scientists and lay people have made their genomes public, genetics
research and scholarly publication standards call for protection of
the identities of research subjects and their families. Bioethicists
distinguish between identifiable, de-identified and anonymized whole
genome sequencing data. (Presidential Commission, 2012) In the US,
de-identified data is not protected under the laws protecting human
subjects known as the Common Rule. Concerns can arise about whether
particular methods of de-identification and anonymization adequately
shield individuals from invasion of privacy and breaches of
confidentiality (Yoo et al. 2018). "Differential privacy"
is an anonymization approach to personal data sharing favored by some
computer scientists that has potential value to health care data
(Dwork 2006).



The use of the anonymously deployed personal diary for learning about
and assessing health-related behavior is commonplace (Minichiello et
al. 2000). Research subjects are asked to record contraception use,
condom use and other sexual practices in diaries which become research
tools. Researchers must take care to warn research subjects about the
dangers of disclosing information which could expose them to social or
legal sanctions. 



In the context of COVID-19, North American policy makers were
presented with members of the public who concealed their infected
status and chose to travel on airplanes, congregate and not wear
masks. In the heyday of the HIV/AIDS crisis in North America,
policymakers similarly struggled to find ethically sound approaches to
infectious disease control in the face of imperfect compliance with
recommended best practices. Controversy arose in the 1990s over
anonymous testing. Anonymous HIV/AIDS testing is now routinely
performed but was once controversial among ethicists. Anonymity was
defended on the ground that it encouraged testing by individuals
wishing to control when, whether and to whom to disclose their
HIV/AIDS status (Fairchild et al. 2007a). On the other hand, it was
recognized that behavioral surveillance is a potentially useful
component of aggressively protecting public health (Fairchild et al.
2007b; Gallagher et al. 2007; Burr 1999); in some situations,
anonymous testing could make tracking patterns of infection more
difficult. It was suggested that anonymous testing allowed infected
persons to engage in dangerous, morally irresponsible sexual behavior
without accountability. Proponents of anonymous testing replied that
policy-makers and ethicists should not assume that men and women who
learn they are HIV positive on the basis of anonymous tests would
egoistically conceal their status from sexual partners. A few
individuals will knowingly impose serious risks on others, but newly
informed positive test-takers may responsibly notify past and future
partners, refrain from risky behaviors, and seek medical care. The
ethical issues surrounding HIV/AIDS have changed now that the
condition is less stigmatizing and, in developed countries, is a
treatable chronic condition rather than a death sentence. 


### 1.5 Accountability



Confidentiality thrives as a legal duty and institutional practice,
despite the emergent trend towards voluntary openness about personal
medical information. The specifics of health and medical care have
become acceptable topics of ordinary conversation outside the family
circle. In the U.S., public figures have taken the lead, speaking out
about their Covid-19, heart attacks, AIDS, erectile dysfunction,
dementia, Parkinson's disease, melanoma, prostate cancer and
breast cancer. Disclosures that would have been considered indelicate
or stigmatizing thirty years ago are made freely today, whether to
make conversation, share a concern, educate the public, or endorse a
non-profit or pharmaceutical product.



To a noteworthy degree, openness is also compelled by morals and law.
Accountability for personal life is a feature of modern life, and
medical accountability is a feature of modern life. Being accountable
means being called upon to share information, explain, adjust behavior
or submit to sanction. In the wake of COVID-19, SARS, Ebola and AIDS,
new levels of information accountability gained public acceptance.
World-wide, people are coming to think of minor and major contagious
illnesses as conditions giving rise to public accountability. The
accountability that is called for includes information gathering and
sharing as a condition of travel between cities and countries or
entering workplaces and schools. International travelers are asked to
report symptoms of illness to officials. International visitors have
their body temperatures scanned for fever automatically as they
proceed to customs in some airports, workers are asked the same as a
condition of enter workplaces. Mandatory testing, reporting, contact
tracing and the use of prescribed symptom-checking apps, are examples
of health information accountability. Beyond accountability for health
information, the COVID-19 pandemic has made people accountable for
mask wearing, hand washing, self-isolation, social gathering and other
behaviors once considered purely personal. Decisions whether to
vaccinate are also subject to moral and legal accountability, whether
to prevent measles, COVID-19, or flu. 



Many people speak openly about health matters with strangers as a
condition of receiving and paying for health care. For example, a
family needing the assistance of a regional mental health/mental
retardation agency unavoidably places reams of sensitive information
in the hands of government. (Bridges 2017) The same is true of a
family which needs to apply for government benefits for aging or
disabled kin. The more disclosures a family must make, the wider the
circle of confidentiality and the lesser the medical privacy.
Questions of distributive justice are raised by mandatory disclosures
to government made as a condition of access to care. Poor and disabled
persons dependent upon medical assistance from government have
substantially less informational privacy *vis-a-vis*
government than wealthy and healthy persons. The risks and burdens of
state knowledge of the individual are disproportionately borne by the
least well off segments of society.


### 1.6 Professional Norms



The duty of confidentiality is a core consensus norm within health
care (Currie 2005). One important manifestation of this consensus in
the U.S. has been the development of the "certificate of
confidentiality" whereby researchers declare that
confidentiality is of especial interest to their subjects (Wolf and
Zandecki 2006, Wolf et al. 2004). The technological age has given rise
to the call for health care providers, even those who work alone or in
small groups, to be aggressive in the adoption of responsible
information practices. All would agree that office practices can and
should be designed to protect the identity of clients and the privacy
of conversations. Common understandings are that practitioners should
be judicious in the collection of information; they should store
treatment notes and records in a secure manner; they should share
information only with consent or as required by law; and they should
protect sensitive information in its online and off-line forms using
locks, passwords, encryption and other appropriate devices. Sensitive
information that is no longer needed should not be retained
indefinitely.



Health Care providers are ascribed ethical obligations to avoid
casually discussing confidential patient matters in social media or in
e-mail that may not be entirely private or secure (Chretien et al.
2011). They must avoid discussing patient matters on mobile phones in
public places, such as in office corridors, hospital lobbies and on
trains. Confidentiality can be violated by unauthorized recordings and
disclosure of medical photographs. Photography plays a role in medical
specializations including dermatology and plastic surgery, giving
raise to concerns about ethical uses of graphic images of
patients' faces and bodies. At a minimum informed consent would
appear to be required for making and disclosing photographs on whose
basis a person could be identified. Ethically imperative consent was
not obtained in a notorious U.S. case: it came to light in 2013 that a
physician affiliated with Johns Hopkins University Hospital secretly
videotaped hundreds of his obstetrics and gynecology patients with
pornographic intent (Allen 2015). Videotaping has come to play a
routine role in family therapy and is not considered unethical by
typical practitioners (AAMFT 2001). Many clinicians believe the
therapeutic and training benefits of videotaping outweigh the risks of
unauthorized use or disclosure. Even if unauthorized use or disclosure
were not a concern, an ethical question would remain. Should
behavioral health clients be called upon to create recordings which
inherently sacrifice the privacy of their homes, communications and
expressions of emotions?



Physicians are debating whether to increase the use of video and
audio-taping in routine clinical practice, surgery and research, and
bioethicists are weighing in (Blaauw et al. 2014; Makary 2013). Should
office visits be recorded as part of the standard medical record? On
the one hand, recordings would address the problem of faulty memory
and incomplete encounter notes. Recordings could document informed
consent procedures and provide evidence to avert or support
malpractice suits. On the other hand, recordings could inhibit
patients and increase their discomfort. Recording practices might
encourage physicians to be less attentive to the patients in front of
them on the theory that they can always "go back to the
tape" for details.


## 2. Physical Privacy



There has been relatively little attention paid by philosophers to
physical privacy concerns in medicine compared to informational
concerns. Yet typical patients bring a bevy of strong expectations of
modesty, solitude and bodily integrity to doctors' offices,
hospitals, telemedicine visits and other health care encounters. These
expectations that they will not be needlessly touched, crowded, gawked
at or secretly filmed, recorded or imaged relate to the need for
psychological comfort, dignity and security. The internet has made
delivering health care possible across vast distances. (Chepesiuk
1999). Telemedicine, which grew exponentially during the first year if
the COVID-19 crisis, allowed doctors and nurses to evaluate common
medical complaints remotely without touching the patient. In the
meantime, health care typically involves physical contact with
others.


### 2.1 Solitude



Solitude is a form of physical privacy of special interest to medical
ethics (Storr 2005; Barbour 2004). The sick do not want to be lonely
and abandoned, but they may want personal space and time alone.
Solitude has value as a context for quiet reflection about the
significance of illness and injury. A period of solitude after
consultation and self-education is a useful condition in which to make
up one's mind about treatment options.



The sickest patients may both crave and fear solitude. When alone they
come face-to-face with the potentially cruel reality of impending
death. Yet in company they may feel patronized or guilty about the
burdens they impose on family and friends. Whether the suffering is
the agony of injury, childbirth, recovering from major surgery or
dying, persons may feel that they should not have to deal with others
while in such a state or at such a time. Implicit social norms
validate deferring to wishes of the sick or dying for seclusion and
solitude (Post 1989; Nissenbaum 2009). These wishes may arise and be
violated not only in hospital, hospice or nursing home settings, but
also in mental hospitals and prisons, where panoptic policies of
monitoring and surveillance prevail (Bozovic 1995; Holmes and Federman
2006: 16-17; Foucault 1977).


### 2.2 Bodily Modesty



Philosophers in the virtue ethics and Christian ethics traditions have
identified modesty as a moral virtue (Schueler 1999). Modesty is a
form of physical privacy of special interest to medical ethics. If
patients are to receive the best care, they must be willing to expose
their bodies to medical personnel and technicians. Removing
one's clothing for purposes of examination and testing is
routine for most health care consumers. Busy emergency rooms and
neighborhood clinics may be unable to cloak or seclude patients at
all. Harried physicians may forget "bedside manners" and
fail sufficiently to honor patients' modesty expectations.
In-patients in teaching hospitals are expected to adapt to diminished
physical privacy, since medical students and researchers accompany
attending physicians on rounds and participate in care.



Yet feelings of modesty and felt obligations of bodily modesty are
commonplace. Many individuals understand bodily modesty as a moral
virtue, and act accordingly. Under some religious traditions, such as
those of Muslims, Orthodox Jews and the Amish, bodily modesty is a
requirement of faith. Being asked to disrobe, even for a good reason,
may impose the cost of going against principle or desire (Kato and
Mann 1996).



Health care providers respond to the modesty values of their patients
in a number of ways. They provide special modesty garments and
sheeting to minimize nudity. They ask patients to uncover only those
portions of the body which must be exposed, and then only for the
period of time necessary. While hospitals cannot offer every
in-patient a private room, shared rooms are generally dividable by
curtains that grant patients some degree of physical seclusion (and
associational intimacy with visiting family and friends). Male
gynecologists and obstetricians help patients cope with sex-specific
modesty norms and sexual abuse concerns by working with female
assistants. Some health care providers maintain medical procedures
staffing policies sensitive to modesty and harassment concerns.
Indeed, mammograms on women are generally performed by female
technicians. On the other hand, the radiologists and radiology
technicians who deliver prolonged, intimate radiation services to
breast cancer patients are likely to be male. Patients may encounter
health institutions and providers who are unwilling to honor what they
may regard as impractical or discriminatory preferences for same-sex
or same race caregivers, preferences sometimes motivated rightly or
wrongly by modesty concerns.


### 2.3 Bodily Integrity



Another aspect of physical privacy is bodily integrity. Mandatory
testing and health evaluation offend bodily integrity by forcing
persons to submit their bodies to unwanted touching and visual
inspection (Allen 2014). Policy makers and the courts have generally
permitted a great deal of nonconsensual urine testing of school
children and people in jobs tied to public safety, public service and
crime control. Drivers can be subjected to alcohol intoxication
screening at road blocks or in hospital emergency rooms after
accidents to promote highway safety. The concerns about neuroimaging
and lie detection raised earlier in this article under the rubric of
secrecy could as easily be raised here in connection with bodily
integrity. Nonconsensual uses of imaging and lie-detection to assess
honesty or character arguably demeans and disrespects autonomous moral
agents and assaults bodily integrity. The philosophical issue here is
whether there is some limit to the right of government to sidestep
persons' preferences about the handling of their bodies, body
fluids and tissue samples. These issues arise in peace and war, and
with respect to the living and the dead. Certainly, law-based
constraints exist, but so too do principle-based and other moral
constraints (Faden et al. 1986). Western cultures respect the
integrity of a deceased's body; however advances in transplant
medicine mean the newly dead are a garden of healthy organs that could
be used to save and extend lives. Organ harvesting with or without
consent may be defended on utilitarian moral grounds. Of particular
philosophical import is the issue of whether the bodily integrity of a
person is violated when organs and/or tissue are harvested prior to
brain death or prior to cardiac death. A related philosophical
question is whether a legal regime of opting into organ donation or
opting out of organ donation better serves the demands of justice and
morality. Post-mortem sperm donation raises important ethical
questions about bodily integrity. Harvesting the sperm of a deceased
man raises concerns about respect for corpses; using sperm to create
embryos and ultimately to parent the children of dead men raises
concerns about parental autonomy and beneficence toward children.


## 3. Associational Privacy



Respect for the intimacy of the experiences of suffering, childbirth,
recovery and dying is required by sound ethics. People who are in pain
or grieving have an interest in including some people and excluding
others. People commonly want to reserve sharing the joys of medical
experience with friends and family, no less than the agonies. They
have what can be thought of as an associational privacy interest in
selective intimacy.



Injured, suffering, and dying adults may badly desire intimacy, even
sexual intimacy. A patient may wish to exclude strangers or
inessential medical personnel at times when the presence of loved ones
is welcome. Parents of newborns may regard strangers photographing
their babies as violations of family intimacy. A dying man may object
to being photographed by a physician anxious to take photographs of
the man's surgical wounds for scientific purposes. If
associational privacy is important, a bored visitor strolling the
halls of a hospital should not maneuver to watch a randomly selected
patient give birth; and if he does, he merits criticism as a morally
offensive intruder.



Hospitals and hospital patients have clashed over who should be
allowed visitation and a role in decision-making or hands-on care.
Some institutions have kept extended family, paramours, gay or lesbian
partners and children away from in-patients. On the other hand,
children's hospitals commonly encourage parents to spend as much
time as possible with sick minors, and may have sleeping sofas near
children's beds or sleeping rooms inside the hospital for
attentive guardians.


## 4. Proprietary Privacy



Moral and legal theorists have offered accounts of the relationship
between "property" and "privacy",
"property rights" and "privacy rights" (May
1988; Radin 1987; Thomson 1975). Philosophers have debated the
existence of a property right in the self, both the physical self and
the non-physical self (e.g., the mind or soul) (Lakoff & Johnson
1999). One philosopher has argued that we own our selves and owe
ourselves a self-love that constrains how we ought to treat our selves
and allow others to treat us (Annas 1989).



John Locke famously characterized the relationship between a person
and her body as self-ownership. However, other philosophers have held
that persons are stewards of their bodies rather than owners (Honore
1961). In medical contexts, under rubrics of privacy, individuals are
sometimes ascribed rights of self-ownership and the ownership of parts
and products of their bodies (Moore 2005). In this vein, a
philosophically interesting invasion of privacy argument was advanced
in the landmark California case *Moore v. Regents of the University
of California* (1990). Without his knowledge or consent,
University of Southern California research physicians developed a
commercial cell line from tissue removed from leukemia patient John
Moore. Moore and an appellate court argued that in taking his
DNA-laden tissue for unrevealed research and development purposes
unrelated to Moore's cancer care, UCLA doctors had appropriated
Moore's identity in a manner analogous to advertisers using a
person's photograph without consent for commercial gain.
Moore's privacy claim was novel at the time, but the claims of
celebrities and others to control the attributes of their personal
identities--likenesses, voices, names, monikers, trademarks, and
Social Security numbers--are commonly styled as privacy rights
and have been since the early 20th century. John
Moore's privacy claim was not successful in court. The
California court held that Moore's doctors ought to have
obtained his informed consent; but the court was unwilling to
commodify human tissue or DNA as private property (Radin 1987). Nor
did the court think Moore's injury fit the mold of traditional
invasions of privacy recognized in the law. In a related case that did
not result in tort litigation in her lifetime, cells taken from
Baltimore resident Henrietta Lacks were the basis of an important
immortal cell line, HeLa. Lacks died in 1951, but the cell line
created using her cervical cancer cells without her knowledge or
consent lives on. It has been used in the treatment and eradication of
numerous conditions and illnesses, including polio, without any
financial reward to her or her heirs.



But proprietary understandings of privacy continue to find expression
in health care and health research contexts. Scholars suggest that
individuals have privacy interests in their genes, genomes and
bio-banked tissue specimens. These are sources of health information
that reflect what individuals and their biological families are like,
and what will become of them. Since most people share a DNA profile
with no one other than an identical twin, a person's DNA is
virtually a unique personal identifier. The interest individuals have
in controlling the use of their data and specimens can be reconciled
with researchers' needs for genotypical and phenotypical data,
where principles of informed consent are honored (Presidential
Commission 2012). Many people are now willing to voluntarily share
genetic data without personal gain. The United States National
Institutes of Health "All of Us" project sought to enroll
one million American volunteers of diverse backgrounds into a research
program requiring that they share medical and genetic data to help
accelerate the search for disease cures and treatments.



Infertility medicine is a growing field, one dependent upon gamete
donation and cryopreservation of embryos. Individuals have asserted
what they describe as "privacy" interests in controlling
the fate of gametes, zygotes, and frozen embryos. The privacy
interests debated in the context of infertility medicine are twofold:
a decisional privacy interest in the decision to bear a child with the
help of reproductive technologies, and a proprietary privacy interest
in controlling the fate of the building blocks of human life and the
earliest beginnings of human life, created as a consequence of
one's intentions or the use of one's genetic materials.
While many courts have rejected viewing frozen embryos as property,
they have struggled over how to allocate rights over embryos in cases
of separation, divorce, death, moves and changes of heart.



In an entirely different vein, government regulators and the general
public characterize identity theft as a "privacy" problem
(Allen 2011). In recent years identify theft has become a privacy
problem in the delivery of health care. Because of the high price of
health care, medical identity theft--receiving medical care using
others' personal data for billing purposes--has become a
serious problem. Consumers must worry both about the confidentiality
of their medical records and physician encounters, and about the
possibility that someone will appropriate their personal identifiers
and then use them to defraud health care providers and insurers.


## 5. Decisional Privacy



In medical contexts, "privacy" is commonly used to denote
autonomy, liberty or choice in health-related decision-making (Allen
2014; DeCew 1997; Feinberg 1983). Patients' active participation
in health-related decisions and control of their bodies--without
undue interference of government or unauthorized persons--is a
decisional variant of the concept of privacy. Women are often ascribed
a "privacy right" to use medically prescribed birth
control and to elect medically safe abortions. Men and women are
ascribed a "privacy right" to utilize *in vitro*
fertilization, surrogate gestators, and other reproductive
technologies. Men and women with terminal illnesses or in vegetative
comas are ascribed a "privacy right" to refuse
life-sustaining nutrition, respirators, and medical care (Beauchamp
2000). Decisional privacy was problematically implicated in decisions
whether to self-isolate or wear a facial covering to avert the spread
of COVID-19, and has come up in relation to other health-impacting
life-style decisions. 



Decisional uses of "privacy" featured in this section are
disfavored by some philosophers. They view the term
"privacy" as more clearly and properly suited to
informational and physical uses, which they view as central,
paradigmatic or core. On the other hand, the decisional use of privacy
has *bona fide* conceptual roots in Greek and Roman
antiquity's public/private distinction, marking a boundary
between affairs of politics and government (*res publicae*) and
affairs of the household (*re privatae*). 


### 5.1 Birth Control



Birth control and abortion are common practices the world over. Felt
by many to be deeply private matters, birth control and abortion were
once criminalized on moral and medical grounds, but are safe and
widely available today. Laws categorically criminalizing contraception
and abortion were struck down in the U.S., Canada, most of Europe,
Japan and Taiwan by the final third of the 20th century. In
the United States, in 1965 the Supreme Court struck down laws
criminalizing birth control in *Griswold v Connecticut*, on the
ground that married couples have a "right to privacy" to
use birth control provided by physicians, grounded in the Bill of
Rights and the 14 Amendment. Several of the most effective forms of
contraception are only available through a medical doctor, including,
in some countries oral contraceptives, interuterine devices, and
transdermal implants. 



Feminist philosophers have widely debated the significance of the use
of the concepts of privacy and a "right to privacy" to win
women the capacity to control their fertility (Rossler 2004;
Boling 1996). The concept of "privacy" played a role in
confining women to traditional roles of daughter, wife and mother
under the authority of male heads of households. While Catherine
MacKinnon argued that ascriptions of rights of privacy are merely
palliative distractions from a more basic quest for gender equality,
other feminists have argued that privacy rights play a proper role in
achieving reproductive autonomy and pave the road to greater education
and employment equality (Allen 2000; MacKinnon 1984).



Official Roman Catholic doctrine opposes all non-natural birth
control, birth control devices and all intentional abortions (Pope
Paul VI, 1968, *Humanae Vitae*). Some regard human sexuality as
having an essentially reproductive purpose and artificial birth
control as unethically unnatural. Like Roman Catholics, other
religious faith communities subscribe to a belief that human life
begins "at the moment of conception" when a sperm
fertilizes an egg, and that forms of birth control that may prevent
the development of a fertilized egg to grow into a baby are the moral
equivalents of intentional "abortion". Those who oppose
contraception on personal moral or religious grounds, sometimes but
not always, support a legal "right to privacy" ;
protecting access to medically safe birth control and/or abortion.


### 5.2 Abortion



With the possible exception of the privacy of medical records and
genetic information since the 1990s, no issues have linked the concept
of privacy to medicine more than the issue of abortion rights. Because
of moral and religious disagreement about abortion, the link beween
privacy and abortion rights has been politicized in the United States
for decades (Jonsen 1998: 294ff). 



Avoiding the concept of privacy as such, Judith Thomson employed the
concept of a right to control the use of one's own body in a
famous defense of abortion rights (Thomson 1971). The United States
Supreme Court popularized privacy grounds for abortion rights when it
held in *Roe v Wade* in 1973 that the constitutional right to
privacy requires striking down laws criminalizing medically safe
abortions. Advocates of a decisional privacy right to abortion
maintain that government should not take sides in what is irreducibly
a moral debate, and that individuals should be free to make up their
own minds about the moral status of the unborn (Richards 1986).



Stressing that fetus are not self conscious subjects of experience,
some philosophers have denied that fetuses are moral persons with
rights to life that outweigh women's privacy rights. Those who oppose
abortion privacy argue that abortion should not be left to private
choice because the unborn are in fact equal members of the moral
community, along with newborn infants. Membership in the moral
community is conferred by human status or potential personhood, these
philosophers argue. Religious ethicists sometimes characterize the
unborn as acquiring souls in utero. Some moralists maintain that
women's decisional privacy must yield if science establishes
that a totally unique human life comes into being with fertilization
of an ovum. In support of moral and legal abortion rights, Peter
Singer has argued that science proves that unique human lives do not
begin at conception. Instead, fertilization begins a process of
initially pluripotent cell development that may result in several
human lives, due, e.g., to twinning and other divisions, or in no
human life, due, e.g., to defects that result in spontaneous abortion.
Philosophers Margaret Little and Rosalind Hursthouse contributed
nuance to the ethics of abortion debate by arguing that while autonomy
and privacy concerns are important, *sui generis*
considerations of obligation and virtue are ethically relevant to
decisions about terminating a pregnancy (Little 1999; Hursthouse
1991).



The trend in public policy, dating back to the 1970s in the U.S. and
most of Europe, seems to be moral compromise (McDonagh 1996; Sher
1981). The law tends to permit women to obtain abortions freely in the
first trimester and then to limit access to second and third trimester
abortions. Philosophical differences in how societies think about
abortion ethics are reflected in the four major models of abortion
regulation found around the world. The models of abortion regulation
are (1) the model of prohibition, banning most abortions, even if
medically safe; (2) the model of permission, allowing most abortions
but based legislated eligibility criteria rather than choice; (3) the
model of prescription, requiring even unwanted abortions for eugenic
or population control purposes and (4) the model of privacy, freely
allowing most abortions chosen by women, with minimal restrictions.
While the U.S. under *Roe v. Wade* (1973) used to be a nation
in which the model of privacy prevailed, it has taken on features of a
model of permission regime since 1989 when the U.S. Supreme Court
announced it would begin allowing restrictions. The Court has upheld
restrictions it deems not unduly restrictive of choice, including
mandatory waiting periods and bans on specific second and third
semester abortion (so-called "partial birth")
techniques.


### 5.3 Conscientious Refusal of Medical Services by Professionals



In most countries, the public relies on licensed physicians and
hospitals for medical care. The medicines physicians recommend are
available only from professionally trained, licensed pharmacists. In
the U.S., state and federal laws have been enacted to relieve health
care providers of the obligation to perform medical services that
offend their philosophical, moral, or religious beliefs. Some
policy-makers have argued that health care practitioners should be
free to decline to provide services for which they are professionally
trained if doing so genuinely violates personal conscience (Dresser
2005). Defenders of what have been called "conscience
clauses" and "refusal laws" see themselves as
defending the "privacy" of pharmacists and health care
providers, privacy akin to liberty of thought and freedom of religion
(White 1999). But opponents of such laws see themselves as the true
defenders of privacy, standing up for the "right to
privacy" of patients. They stress that the call for refusal laws
has been tied to larger "pro life" strategies to limit
access to contraceptives, medical abortifacients and surgical
abortions. They say pharmacists who decline to dispense medication are
placing their personal values and autonomy above the values and
autonomy of patients. Furthermore, pharmacists, like physicians and
nurses, enjoy the benefits of regulation and have chosen their
professions voluntarily. Private reproductive choices can be exercised
only if sufficient numbers of health care professionals are willing to
perform lawful services.



Should health care workers be required to dispense medications and
perform procedures that violate their personal scruples? Most
bioethicists agree that in the context of emergency medicine,
conscientious refusal has no place. A physician should not refuse to
terminate an ectopic (tubal) pregnancy threatening the life of the
mother, for example. There is significant disagreement, however, about
whether morally-based refusal is warranted by retail pharmacists. An
ethical code promulgated by a pharmacists association arguably places
patients' need and social justice above the personal convictions
of individual pharmacists (APHA 1994). Whether pharmacists can
ethically refuse may depend upon the proximity of other pharmacists
willing to serve in their places. Ethicists also disagree about
whether physicians may use their scruples as rationales for refusing
to answer medical questions or refer patients to abortion providers. A
further, related, question is whether physicians in countries where
abortion is safe and legal may ethically follow their public or
private employers' orders to refrain from providing information
about abortion services to patients.


### 5.4 Assisted Reproductive Technology and Enhancements



Some legal commentators and philosophers have argued that infertile
persons have a right to procreative privacy that entails a right to
use technology and surrogates to bear children. Assisted reproductive
technology services ("ART") include medicines to balance
hormones, regulate ovulation, and stimulate the production of viable
eggs; and surgery to unblock Fallopian tubes or undo the damage of
endometriosis, miscarriages, ectopic pregnancies and pelvic
inflammatory disease. Reproductive services also include sperm and egg
harvesting and donation, *in vitro* fertilization, zygote and
embryo transplant, reproductive organ transplant, cryopreservation
("freezing") of pre-embryos, and surrogate
pregnancies.



It may be argued that the ability to freely choose ART, like the
ability to freely choose sterilization, abortion and birth control, is
called for by the right to privacy. But ART use raises its own moral
and practical concerns. One concern is the false hopes ART creates in
a world in which the technology is expensive and the success rate low.
The availability of affordable treatments can cause conflict within
families in some societies. Women report feeling pressured by their
families to undergo repeated painful attempts to get pregnant. It may
argued that adoption is a more satisfying, affordable and socially
commendable option for becoming a parent. The use of reproductive
technology has led to bioethical concerns about the handling of the
earliest beginnings of human life. Ethical concerns surround exposing
otherwise healthy women to the uncertain health risks of repeated
rounds of fertility drugs and high-risk multiple pregnancies with
twins and triplets. In a few tragic cases children created using ART
have been unwanted, raising questions of responsibility and the just
role of family law. What should happen if the people who contract with
a surrogate mother to carry a child for them using donated egg and
sperm change their minds after a child is conceived? Should the
mind-changers be deemed the parents? Should the gestator be deemed the
parent; the gamete donors? Should parentage be assigned by a judge
based on the best interest of the child?



The realm of reproductive technology is surprisingly *laissez
faire* in the U.S., more regulated in the United Kingdom. Some
U.S. constitutional lawyers argue that the right to bear and beget
children enshrined by the Supreme Court in Fourteenth Amendment
jurisprudence is a right to bear and beget by virtually any consensual
means necessary. There is a right to reproduce, they argue, and a
right to use other people and social resources to help one reproduce.
Some have even argued that the right to procreative privacy is a
reason for government or employers to pay for fertility services. In
Israel, Germany and Taiwan, government subsidizes ART for infertile
couples. Some major private insurers cover fertility treatments in the
U.S. Great Britain has enacted a statute and created a governing body
to deal with policy and ethical questions raised by the growing
popularity of artificial reproductive technologies. The Human
Fertilization and Embryology Act 1990 created the HFEA, an agency
charged to license and monitor IVF, donor insemination, human embryo
research, and the storage of gametes and embryos.



It is now possible to select the sex of one's offspring. Some
bioethicists have argued that a "right to privacy"
countermands government placing bans on sex selection. Supporters of
sex selection sometimes argue that choosing a child's sex is a
future parent's moral and legal right. Some methods of sex
selection include: (1) Amniocentesis testing to determine sex,
followed by abortion if the fetus has the undesired sex; (2) Sperm
sorting to produce X rich or Y rich batches of sperm, followed by
*in vitro* fertilization or insemination to increase chances of
having a child of the desired sex; (3) preimplantation genetic
diagnosis ("PGD") to determine the sex of a pre-embryo,
followed by implantation of one or more pre-embryos of the desired
sex. Amniocentesis and PGD were techniques developed originally to
determine whether a fetus or embryo was affected by a genetic disorder
such as Down's syndrome or cystic fibrosis. In some
jurisdictions abortion or PGD solely for sex-selection other than to
avoid sex-linked disorders is illegal.



Adults who want children often prefer children of a particular sex, or
a "balance" of male and female children, perhaps born in a
particular order. Medically-assisted high-tech sex selection raises
large ethical issues. PGD involves creating human embryos, some of
which will not be used. Freezing, destroying and giving away human
embryos can seem inconsistent with respect for human dignity. Sex
selection is arguably a kind of gender discrimination and could
heighten problems of pernicious gender discrimination. Sex selection
plays into gender stereotypes and could someday throw off the
societal, even global balance of males and females. Sex-selection is
controversial as a first step on a slippery slop toward
"designer babies".



Men and women in developed countries are "designing" their
babies (Parens and Knowles 2003). In the context of fertility
medicine, patients select donated egg and sperm based on criteria such
as the race, IQ, SAT scores, and detailed physical profiles of the
donors. The capacity to select the traits of offspring is likely to
expand in the coming years. It has been argued that a "right to
privacy" countermands government placing bans on trait selection
through genetic selection and manipulation. If women and their
partners had an unlimited right to reproductive autonomy, it arguably
would follow that they have a right to use technologies that enable
them to choose the precise traits of their children. Yet the right is
clearly not unlimited, and using technology to achieve
"perfect" or "superior" humans may be
unethical, even if using technology to screen out tragic abnormalities
and diseases representing extremes of suffering is not (Presidential
Commission 2015b).



Michael Sandel has argued that the quest for genetic enhancements and
other god-like mastery over the human body reflects a failure to
appreciate fully the "giftedness" of life and the ethical
value of "humility, responsibility, and solidarity"
(Sandel 2007: 12 and 86). Ronald Green has cautioned against a
*status quo* bias that leads us to the irrational conclusion
that human beings should remain as they are (Green 2008: 9). John
Harris has moved several steps beyond Ronald Green in building a case
against preserving the status quo. Offering what he calls "the
ethical case for making people better", Harris has argued that
society ought to leap on opportunities to create "healthier,
longer lived, and altogether 'better' individuals"
(Harris 2007). In the future, the notion of decisional privacy may
play a major role in building a case for allowing individuals and
families to use or refuse genetic, pharmaceutical and other forms of
enhancements.



The issue of biological enhancement is not limited to the context of
prenatal intervention. Concepts of health privacy may be brought to
bear on questions surrounding the ethics of electing to utilize
medical procedures or drugs to improve the motor and cognitive
capacities of people seeking to be "normal" or
"superior". The privacy-as-autonomy argument for allowing
largely unfettered choice has been less controversial where persons
and clinicians aim to bring someone who is suffering from disease or
disability to within normal ranges, than where the aim is to enable
someone to surpass normal levels. Thus, prescribing or taking Ritalin
to combat ADD/HD may meet with moral approval as a matter of medical
privacy, while prescribing or taking Ritalin to achieve a higher SAT
score does not (Presidential Commission 2015b).


### 5.5 Medically Unhealthy Life-Styles



Does privacy entail largely unfettered lifestyle choices? Should the
state enact health and safety rules designed to save people from poor
private choices such as eating sugary, high fat foods, smoking and
refusing to wear motorcycle helmets? Are individuals entitled to
unfettered enjoyment of drinking alcohol, using drugs recreatioally
and a medication-free existence? The answer John Stuart Mill gave to
such questions in his famous essay *On Liberty* (1869) was
"yes" to the extent that these are self-regarding
behaviors that do not harm others. Mill defended liberal tolerance of
intoxicants and narcotic drugs on the ground that liberty nets society
benefits that are lost when government tells us what to do. A
libertarian perspective condemns the "nanny state" that
fails to treat citizens like conscientious adults (Harsanyi 2007:
41).



A robust regard for liberty prompts adopting an extreme libertarian
perspective on the law. Yet "[t]he notion of radical
individualism focuses on individual health behavior and ignores the
social preconditions of that behavior "(McGee 1999: 211). What,
on the surface, appear to be inviolate personal choices may be
straightforward products of social forces as diverse as "media,
advertising, movies, literature and folklore" (McGee 1999: 212).
Debates over managed care have stressed that individuals'
unhealthy choices have externalities, including higher health care
costs for fellow citizens. Unhealthy lifestyles can impose substantial
costs on others. Smokers impose the costs of illnesses caused by
exposure to second-hand smoke. Unhealthy diets and the lack of
exercise can contribute to reduced worker productivity and increase
health care spending. Obesity in pregnancy can adversely impact the
health of developing fetuses and infants. Unhealthy lifestyles divert
societal resources from other areas of public need, such as education
(McGee 1999).


### 5.6 The Patient's Right to Refuse Life Saving Care



Whether persons with mental conditions are morally required to take
medications that make them better able to live normal lives could be
styled as a question of the limits of private choice. Some mental
health patients are not competent to make their own treatment
decisions, but the vast majority are competent most of the time. Some
patients are offered medications by their physicians to curb
distinctly anti-social impulses such as oppositionality, verbal
aggression and violence. It could be argued that these patients have
an ethical obligation to medicate themselves, as advised. Competent
patients with cognitive and emotional problems (such as moderate
depression or mild hallucinations) that affect mainly themselves may
plausibly argue that the benefits of psychotropic medications are not
outweighed by the risks of lethargy, sexual dysfunction, tremor,
speech problems and organ damage. Questions of political philosophy
are implicated in debates over the extent to which authorities may
compel medication use by death row inmates, defendants awaiting trial,
prisoners and in-patients in state hospitals.



The flowering of bioethics as an academic discipline and branch of
philosophy was fed by religious, moral and ethical concerns raised by
high profile legal cases about the right to die (Beauchamp 2000).
These cases seemed to place the power to "play
God"--make life and death decisions--in the hands of
patients, families and physicians. The field was influenced, for
example, by the famous Karen Quinlan decision (*In the Matter of
Quinlan*, 1976). This case transported the federal constitutional
ideal of the right to decisional privacy into state law, and
characterized the right of a comatose woman's family to refuse
life-saving treatment on her behalf as a "right to
privacy" (Jonsen 1998). After the Quinlan decision, hospitals
began setting up ethics committees to help doctors, patients and
families exercise decisional privacy rights in a lawful and
responsible manner. In 1986, the U.S. Supreme Court recognized in the
case of Nancy Cruzan a right of patients to refuse medical care such
as artificial respiration and tube feeding, where the wishes of the
patient to die could be established by clear and convincing
evidence.



Moral philosophers have sought a greater role for ethics in shaping
interpretations of constitutional law in life and death cases. On
December 6, 1996, six prominent U.S. moral philosophers submitted an
unprecedented brief to the U.S. Supreme Court in two cases,
*Washington v. Glucksberg* (1997) and *Vacco v. Quill*
(1997). The philosopher's were on the losing side. The U.S.
Supreme Court refused to strike down laws banning assisted suicide,
instead upholding state laws in New York and Washington that
criminalized physician-assisted suicide. The Court argued that states
have an interest in protecting life, protecting the poor and the
disabled, and promoting physicians' ethical integrity.
Patient's rights groups had argued that laws banning physician
assisted suicide violated the privacy and equality rights of people
with terminal illnesses.



According to what came to be known as "The Philosophers'
Brief", signed by Ronald Dworkin, Thomas Nagel, Robert Nozick,
John Rawls, Thomas Scanlon, and Judith Jarvis Thomson in 1997 in
connection with the United States Supreme Court case, Washington v.
Glucksberg, 521 U.S. 702 (1997),



> 
> 
> A person's interest in following his own convictions at the end
> of life is so central a part of the more general right to make
> 'intimate and personal choices' for himself that a failure
> to protect that particular interest would undermine the general right
> altogether. Death is, for each of us, among the most significant
> events of life. (Dworkin et al. 1997 [2007] pp.548-561)
> 
> 
> 



The Brief went on to argue that there is little moral difference
between allowing an authorized physician to administer a life-ending
injection on behalf of a terminally ill patient and allowing an
authorized physician to turn off the respirator or remove the feeding
tube of a person in a vegetative coma.



The 2007 Theresa Schiavo case raised the philosophically important
question of when it is ethical to exercise privacy rights. A Florida
court allowed spouse Michael Schiavo to terminate life support on wife
Terri's behalf, after the court found that Terri's
autonomous choice would have been to refuse life-sustaining care if
she were hopelessly comatose. Since the age of twenty-five, Terri had
subsisted in a "persistent vegetative coma". Autopsy
established that Terri had massive and irreversible brain damage, as
her husband believed. Terri's parents had doubted the diagnosis
of hopeless coma and wanted their daughter alive. Assuming Michael
Schiavo was justified in ignoring the pleas of strangers who wanted
him to keep his wife alive, it is less clear that he was justified in
turning down the pleas of his wife's own parents, who urged
Schiavo to waive his wife's "privacy" and offered to
assume complete responsibility for her care. What are the obligations
of kin to honor the care and kinship wishes of fellow family members?
What weight do privacy arguments on behalf of an incompetent spouse
have in the face of parental claims?


## 6. Conclusion



Philosophers have identified and debated several meanings of
"privacy" deployed in medical contexts. Respect for
recognized forms of privacy --informational
 (Section 1),
 physical
 (Section 2),
 associational
 (Section 3),
 proprietary
 (Section 4)
 and decisional
 (Section 5)--is
 an ideal of biomedical ethics for the conduct of clinical research
and administrative practices relating to physical and behavioral
health. There is wide philosophical consensus about the importance of
medical confidentiality, modesty and bodily integrity in all health
settings; but substantial philosophical disagreement about the limits
of personal autonomy or individual choice in fields relating to
contagious diseases, human reproduction and genetics. Recently,
sharing medical information with family friends and the general public
voluntarily has supplanted norms of secrecy prompted by shame and
stigma. Moreover, voluntarily sharing medical data is widely
encouraged by researchers and officials to promote public health and
precision medicine. As digital medical data technologies, mobile
health care apps, telemedicine, public health surveillance, and brain
imaging technologies expand, the range and complexity of important
privacy questions in medicine will also expand.