Privacy and Confidentiality Walter Davis, MD Center for Biomedical Ethics and Humanities

1. Privacy and ConfidentialityWalter Davis, MDCenter for Biomedical Ethics and Humanities

2. Confidentiality • In clinical care • In public health • In genetic testing • In the collection of biological materials

3. A Married Man Contracts Syphilis Steve is a 38-year old married man who frequently travels in the course of his business. Recently, he developed a vesicle on his penis. After an examination by his physician, Steve is diagnosed as having primary syphilis. His physician informs him that this diagnosis will have to be reported to the State Department of Health, in accordance with state law governing sexually transmitted disease (STD). When asked what this will mean, the physician explains that the health department might then trace all of Steve’s sexual contacts to inform them of possible exposure and the need for treatment. Steve is clearly uncomfortable with this reporting requirement. He states that he must have contracted the disease on a business trip in Miami, where he had a “brief affair.” He tells his doctor that he has not had any sexual contact with his wife since that out-of-town interlude and he would appreciate it if his doctor would not mention this to anyone, especially his wife. The doctor has trouble making that sort of commitment, and wonders what his obligations are in this case.

4. I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfill according to my ability and judgment this oath and this covenant: To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art – if they desire to learn it – without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but to no one else.

5. I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice. I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.

6. I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men who are engaged in this work.

7. Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves. What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself holding such things shameful to be spoken about. If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.

8. A Married Man Contracts Syphilis Steve is a 38-year old married man who frequently travels in the course of his business. Recently, he developed a vesicle on his penis. After an examination by his physician, Steve is diagnosed as having primary syphilis. His physician informs him that this diagnosis will have to be reported to the State Department of Health, in accordance with state law governing sexually transmitted disease (STD). When asked what this will mean, the physician explains that the health department might then trace all of Steve’s sexual contacts to inform them of possible exposure and the need for treatment. Steve is clearly uncomfortable with this reporting requirement. He states that he must have contracted the disease on a business trip in Miami, where he had a “brief affair.” He tells his doctor that he has not had any sexual contact with his wife since that out-of-town interlude and he would appreciate it if his doctor would not mention this to anyone, especially his wife. The doctor has trouble making that sort of commitment, and wonders what his obligations are in this case.

9. Some medical considerations • Risk that Steve’s wife has been exposed • Risk that other contacts have been exposed • Confirmatory antibody testing • If the vesicle represents herpes, that indicates primary infection much earlier • Wife herself may be source of infection • Wife should be notified so she can be tested – fetal risk, neurosyphilis in late stage • HIV testing may be indicated

10. What obligations does the MD have to maintain confidentiality? • “Role-related” duties • Consequences for md-pt relationship • In some states, state licensing law, case law, state health codes or other state or federal regulations require confidentiality

11. Exceptions to MD’s obligation to maintain confidentiality • In many states, legal obligation to report STDs to state health depts. for contact notification—not to the intimate contact • Disclosure to managed care organization or other insurer (unless he pays out of pocket)

12. What about obligations to Steve’s wife? • MD may encourage Steve to disclose • MD notification of wife that she has been exposed incompatible with traditional view • (Exceptions have been made for HIV in some states) • Legal status of third party notification unclear (Tarasoff)

13. An Elderly Driver Selma is an 80-year-old widow who is being treated by an internist for hypertension. She tolerates her medications well and is considered to be in good health. She has suffered progressive visual loss, however, and has been told by her ophthalmologist that she has macular degeneration. Her visual acuity is 20/200 in her right eye and 20/70 in her left. Selma lives by herself in a suburban neighborhood. Her grown children live in another state. One of her friends, who is a patient of the same internist, has confided that Selma is still driving, and she wonders if that is a good idea, considering her poor vision. At Selma’s next visit to her physician, she is asked about her driving. “Of course I’m still driving,” she says. “How can you survive without a car out here?” She is eager to point out that she has never been in an accident, she only drives to the store now and then, drives at “a snail’s pace,” and would “certainly be able to see a cow or an elephant.” She assures the doctor that there are no small children around and that she will be careful. Besides, she asserts, her peripheral vision is “as good as ever.”

14. Some medical considerations • Functional ability, not diagnosis, is the issue • Risk taking behavior may be more important than visual limitations • Alzheimer’s disease, seizure disorders, alcoholism, may impair functions relevant to driving • Correctible underlying disease states should be identified – visual, auditory

15. Ethical and legal considerations • Some states require retesting for older drivers • Some states require MDs to report persons with certain medical conditions (esp. epilepsy), but may cause patients to under-report symptoms • Limited or restricted licenses available in some states

16. What if Selma insists on continuing to drive? • The MD must at least encourage her to restrict her driving and refer her to community transportation sources • If local law requires reporting loss of visual acuity, then MD must comply • If not, assurance of confidentiality allows patients to feel they can confide in MDs • And, as a practical matter, to whom would the MD report?

17. When do MDs’ responsibilities to third parties trump confidentiality? • Vulnerable persons (e.g., child abuse) • Innocent third parties (e.g., risk of communicable disease) • Persons in imminent or foreseeable danger • Selma’s case does not fall neatly into any of these categories

18. The big questions • Is the MD a societal agent? • So justified, where do such breaches of confidentiality end? • Should private MDs become agents of the state? • Whose job is it to ensure safety on the road?

19. Public health • Tension between individual confidentiality and public welfare may be compromised in favor of latter • Serious threat • Effective intervention available • Least restrictive means possible • Least compromise of confidentiality possible

20. Genetic testing • “Tests” are hard to interpret, easy to over interpret, generally of limited predictive value, but very tempting • Results of genetic tests for disease susceptibility may be of great interest to insurers, employers, academic institutions • Life/AD&D insurance • Occupational safety (Santa Fe case RE carpal tunnel) • Admission to medical school?

21. But a lot of genetic data is out there • The US Dept. of Defense has millions of blood samples • Huge private DNA databases being established • Decode Genetics (Iceland) • Biobank (UK) • Many private companies

22. Biological materials • Consent of donor required for tissue samples to be used in research • Samples unlinked to individually identifiable information preferable, but often impractical • If linked samples are to be used consent must be obtained and link or key must be carefully guarded

24. Declare the past, diagnose the present, foretell the future; practice these acts. As to diseases, make a habit of two things – to help or at least do no harm. The art has three factors, the disease, the patient, the physician. The physician is the servant of the art. The patient must cooperate with the physician in combating the disease. Hippocrates, Epidemics I

25. The dignity of the physician requires that he should look healthy, and as plump as nature intended him to be; for the common crowd consider those who are not of this excellent bodily condition to be unable to take care of others. Then he must be clean in person, well dressed, and anointed with sweet smelling unguents that are not in any way suspicious. This, in fact, is pleasing to patients….

26. In appearance, let him be of a serious but not harsh countenance; for harshness is taken to mean arrogance and unkindliness, while a man of uncontrolled laughter and excessive gaiety is considered vulgar, and vulgarity especially must be avoided. Hippocrates, The Physician

27. I urge you not be too unkind, but to consider carefully your patient’s superabundance or means. Some times give your services for nothing, calling to mind a previous benefaction or present satisfaction. And if there be an opportunity of serving one who is a stranger in financial straits, give full assistance to all such. For where there is love of men, there is also love of the art. Hippocrates, Precepts