1	“Do the right thing” — Spike Lee — Immanuel Kant
2	Ethics and privacy Rory Jaffe, MD MBA Chief Compliance Officer UC Davis Health System
3	Outline History of privacy Ethical theories Categorizing privacy arguments The balancing act Using ethics in communications
4	History Privacy through the ages
5	Hippocrates c. 430 BC, near the beginning of formal medicine in Greece One of the first paid teachers of medicine Hippocratic oath “Whatever I see or hear, professionally or privately, which ought not to be divulged, I will keep secret and tell no one.”
6	Declaration of Geneva Adopted 1948, World Medical Association At the time of being admitted as a member of the medical profession:… I will practice my profession with conscience and dignity; The health of my patient will be my first consideration; I will respect the secrets which are confided in me, even after the patient has died;…
7	Louis Brandeis “[T]he right to life has come to mean the right to enjoy life, — the right to be let alone…” “It is like the right not to be assaulted or beaten, the right not to be imprisoned, the right not to be maliciously prosecuted, the right not to be defamed.” Violating the right to privacy violates the person.
8	Louis Brandeis “Recent inventions and business methods call attention to the next step which must be taken for the protection of the person…” “[Technology has] invaded the sacred precincts of private and domestic life; and numerous … devices threaten to make good the prediction that ‘what is whispered in the closet shall be proclaimed from the house-tops.’”
9	Universal Declaration of Human Rights UN Article 12: No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation
10	California Constitution Article 1, Section 1 All people are by nature free and independent and have inalienable rights. Among these are enjoying and defending life and liberty, acquiring, possessing, and protecting property, and pursuing and obtaining safety, happiness, and privacy.
11	Council of Europe Convention for the Protection of Human Rights and Fundamental Freedoms Right to privacy added 1990
12	Article 8 – Right to respect for private and family life Everyone has the right to respect for his private and family life, his home and his correspondence.
13	Public Law 104-191 §264 The recommendations under subsection (a) shall address at least the following: The rights that an individual who is a subject of individually identifiable health information should have. The procedures that should be established for the exercise of such rights. The uses and disclosures of such information that should be authorized or required.
14	HIPAA preamble It is important not to lose sight of the inherent meaning of privacy: it speaks to our individual and collective freedom. — DHHS Few experiences are as fundamental to liberty and autonomy as maintaining control over when, how, to whom, and where you disclose personal material. – Janna Smith
15	HIPAA preamble One in six Americans reported that they have taken some sort of evasive action to avoid the inappropriate use of their information by providing inaccurate information to a health care provider, changing physicians, or avoiding care altogether. Association of American Physicians and Surgeons reported 78 percent of its members reported withholding information from a patient’s record due to privacy concerns
16	Different ethical lenses Ethical systems attempt to answer moral questions; distinguish right from wrong Different “right” answers Review of a few ethical frameworks Ethics of consequences Ethics of intentions Ethics of rights Ethics of character
17	Ethics of consequences Utilitarianism Jeremy Bentham, John Stuart Mill Do that which maximizes the good What is “good”? Pleasure Happiness Justice and freedom QALYS — quality-adjusted life-years Measure the outcomes, not the motives
18	Utilitarianism flavors Act Gives case-by-case answers Ignores “Justice”: e.g., hobo with TB Rule Produce greatest amount good for society as a whole Ignores exceptions: e.g., Anne Frank Practice Justifies general practice but not each act
19	Ethics of Intentions Ethics of duty and respect Immanual Kant “Do the right thing” Unlike utilitarianism, looks at motivations
20	Intentions An action has greater moral worth if it is done for the sake of duty Duty, not self-interest An action is morally correct if its maxim can be willed as a universal law Subjective rule that would be best for everyone to follow We should always treat humanity, whether in ourselves or other people, as an end in itself and never merely as a means to an end Respect people; don’t use them
21	Problems with intentions Devalues those who enjoy doing the right thing Emotional judgment doesn’t count Actual consequence of act has minimal importance
22	More problems with intentions
23	Ethics of rights Ethics of entitlements Central role in politics today John Locke Negative right: entitlement to do something without interference from others Positive right: entitlement obligating someone else to assist you
24	Types of rights Natural rights (human rights): inherent to every human Legal rights: belong by virtue of being in a country Moral rights: justified by moral theory
25	Strength of rights Can have at most one absolute right, probably none Some trump others moral equivalent of rock-paper-scissors
26	Strength example Right not to be tortured Right to live Right to private property Right to breathe unpolluted air Right to smoke
27	Declaration of Independence We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
28	Nonsense on stilts — Bentham Who figures out what are rights? UN — Universal Declaration Human Rights: No one shall be subjected to torture Everyone has the right to own property Everyone … has the right to equal pay for equal work Everyone has the right to rest and leisure, including … periodic holidays with pay Everyone has the right freely to … enjoy the arts
29	Ethics of character Ethics of virtue Aristotle What kind of person should I be? Nourish both practical wisdom and uniqueness of each person Antireductionistic
30	Definition of a virtue Acquired, not inborn Involves both feeling and action Seeks the mean in all things “Prudent person” test for the mean
31	Examples of virtues Courage Cowardice, Courage, Foolhardiness Compassion Callousness, Compassion, “Bleeding heart” Self-love Servility, Proper pride, Conceit
32	Problems with virtue ethics Fails to tell us how to act Must be complemented with ethics of action Utilitarianism Duty Rights Etc.
33	Arguments about privacy Consequences Rights Duty (e.g., Hippocratic oath)
34	Argument for privacy: consequences Bad things that happen when information gets distributed Marketing Identity theft Loss of job Fear of telling doctor the truth
35	Argument for privacy: rights Autonomy: lose some when private information used without consent Ownership: the information belongs to the individual Privacy: the right to be let alone
36	Argument against privacy: consequences Infectious diseases Dangerous drivers Impaired practitioners Need to advance science
37	Argument against privacy: rights Autonomy: need to conduct our business Ownership: the information belongs to the person who developed it
38	Choosing between conflicting rights and/or consequences Conflict between individual and public good Research Public health Law, etc. How do you balance that which you cannot measure?
39	Article 8 – Right to respect for private and family life There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
40	Figuring out article 8 Even if the infringement of privacy is in accordance with the law, and it is for one of the legitimate objectives, it must still be proportionate in order for it to satisfy Article 8 . This is a very important requirement, meaning that the nature and extent of each interference must be evaluated with regard to the end to be achieved. This is often put colloquially as not using a sledgehammer to crack a nut. The more severe the infringement of privacy, the more important the legitimate objective in each case will need to be. It is likely that this will involve deciding whether the interference is required by a pressing social need, and analyzing the extent to which an alternative less intrusive interference would achieve the same result.
41	Use as a communication tool
42	Traditional medical viewpoint Doctor-patient Rest of world does not exist
43	Broadening the ethical arena Physicians used to moral decisions, but in a limited arena Consider effects (consequences) on others Consider interests (rights) of others Use their ingrained drive to “do the right thing”
44	References Ethics: A pluralistic approach to moral theory, by Lawrence M. Hinman Defining moments: When managers must choose between right and right, by Joseph L. Badaracco, Jr. Federal Register, Vol. 65, 12/28/2000, pp 82463-82474
45	Case study A judge has ordered Planned Parenthood officials to turn over within a month the names and addresses of women who took pregnancy tests at a Storm Lake clinic. The names and addresses are a last resort for county authorities, whose search has stalled for the mother of a newborn baby found dead at a recycling center in May.
46	The clinic refuses to obey “Astonishingly, PPGI apparently considers itself and its personnel to be above the law and not required to respond to a valid issued and served subpoena,” wrote Nelson, a Clay County judge. … no doctor-patient privilege exists because Planned Parenthood employees don’t have to be doctors or nurses to give pregnancy tests.
47	Who’s right? Whose rights? Three other clinics in Buena Vista County have turned over pregnancy-test records, authorities said.