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MEDICAL ETHICS: RIGHT TO KNOW, OR NOT TO KNOW

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Nov. 29, 2002 – The recent 9th annual Bio-Medical Ethics Workshop at Roy L. Schneider Hospital featured Virgin Islander Dr. Bert Petersen Jr., surgical oncologist at Beth-Israel Medical Center's breast cancer program and director of the family risk program.
Dr. Petersen's topic at the Wednesday session, "Management of Cancer Patients with Psychological Distress," covered much more than medical care, as befits a topic of the program sponsored jointly by the Schneider Hospital and the Pastoral Care/Bio-Medical Ethics Committee.
Warning his audience of primarily medical professionals that the lecture would contain "lots of science," Dr. Petersen used graphic slides to get the facts across in an address that delved into the Human Genome Project, which completed mapping of the human genetic code two years ago, the behavior of different types of cancers, and the relation of hereditary factors descending from father or from mother to individuals.
Along the way, he made observations that should give pause to presently healthy women. An example for the attention of smokers: Although breast cancer is the No. 1 cancer among women, lung cancer is the No. 1 killer.
He also addressed V.I. medical care, and emphasized that the community must fight the battle against the Medicaid cap. Observing that, even when the planned V.I. cancer center becomes a reality, Medicare and Medicaid will not pay for genetic testing, he said the Susan G. Komen Foundation has been enlisted help with costs.
He also noted that most genetic testing in the United States is performed by Myriad Genetics Inc., the firm that did all the 9-11 DNA testing.
Identifying an issue of concern to many individuals, he said there are no documented cases of group health insurance companies discriminating against individuals on the basis of testing results.
Following Science Knowledge Come the Family and Patient Ethics Issues
After the detailed scientific background, Dr. Petersen went into the family ethics issues – the right of patients to know, the right not to know, sharing information and with whom, coercion of patient or family, privacy and confidentiality versus warning at-risk family members, testing of minors, the total testing issue.
Because he welcomed audience questions along the way, the session gradually segued into a panel discussion, as the program intended, with comments by facilitator Carthy Thomas of the V.I. Health Department's Cancer Information Services, V.I. American Cancer Society president Fern LaBorde, oncologist Dr. Herbert Goldman, and Amos Carty Jr., wearing his hat as hospital and Keating Clinic legal counsel.
As the discussion began, Dr. Petersen enlisted Carty for local law particulars, as it was noted that medical actions in ethical issues are bound primarily by state or territorial law, and such laws vary widely. Carty agreed, and noted that the Virgin Islands has no general privacy law but only an HIV-specific confidentiality law. There are individual laws to cover such specifics as the important health care power of attorney and a hospital "brain-dead protocol," but much remains in gray areas. Carty noted that health care providers are therefore in a difficult position, and the hospital enlists social workers to "go the extra mile" in such matters as locating absent family members.
Dr. Petersen chronicled ethical issues that arose in specific cases with his patients in New York. Two sisters, for example, agreed to testing because of family medical history. But the one changed her mind, and refused to hear her own results and refused to let her sister be informed of those results. There's no single solution to which patient has "the right" in such a case. Because of these complicated issues, he said, it is inappropriate to counsel family members together. At these points in time, medical personnel have to turn to social counselors for persuasion and intervention.
The conclusion of speaker, panelists and audience seemed to be that such medical ethics will cause endless discussion, and partial solutions must be fluid and responsive to health care providers, patients and families.

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