HIV prevention and the two faces of partner notification.
(9/26)
In the cases of medical patients with sexually transmitted diseases (particularly those with the human immunodeficiency virus), two distinct approaches exist to notifying sexual and/or needle-sharing partners of possible risk. Each approach has its own history (including unique practical problems of implementation) and provokes its own ethical dilemmas. The first approach--the moral "duty to warn"--arose out of clinical situations in which a physician knew the identity of a person deemed to be at risk. The second approach--that of contact tracing--emerged from sexually transmitted disease control programs in which the clinician typically did not know the identity of those who might have been exposed. Confusion between the two approaches has led many to mistake processes that are fundamentally voluntary as mandatory and those that respect confidentiality as invasive of privacy. In the context of the AIDS epidemic and the vicissitudes of the two approaches, we describe the complex problems of partner notification and underscore the ethical and political contexts within which policy decisions have been made. (+info)
Biomedical conflicts of interest: a defence of the sequestration thesis-learning from the cases of Nancy Olivieri and David Healy.
(10/26)
No discussion of academic freedom, research integrity, and patient safety could begin with a more disquieting pair of case studies than those of Nancy Olivieri and David Healy. The cumulative impact of the Olivieri and Healy affairs has caused serious self examination within the biomedical research community. The first part of the essay analyses these recent academic scandals. The two case studies are then placed in their historical context-that context being the transformation of the norms of science through increasingly close ties between research universities and the corporate world. After a literature survey of the ways in which corporate sponsorship has biased the results of clinical drug trials, two different strategies to mitigate this problem are identified and assessed: a regulatory approach, which focuses on managing risks associated with industry funding of university research, and a more radical approach, the sequestration thesis, which counsels the outright elimination of corporate sponsorship. The reformist approach is criticised and the radical approach defended. (+info)
The Olivieri debacle: where were the heroes of bioethics?
(11/26)
All Canadian bioethicists need to reflect on the meaning and value of their work, to see more clearly how the ethics of bioethics is being undermined from within. In the case involving Dr Olivieri, the Hospital for Sick Children, the University of Toronto, and Apotex Inc, there were countless opportunities for bioethical heroism. And yet, no bioethics heroes emerged from this case. Much has been written about the hospital's and the university's failures in this case. But what about the deafening silence from the Canadian bioethics community? Given the duty of bioethicists to "speak truth to power", this silence is troubling. To date, nothing has been written about the silence. This article is intended as a partial remedy. As well, the article pays tribute to heretofore unsung heroes among Dr Olivieri's research colleagues. (+info)
Should healthcare providers have a duty to warn family members of individuals with an HNPCC-causing mutation? A survey of patients from the Ontario Familial Colon Cancer Registry.
(12/26)
BACKGROUND: As genetic testing becomes more common and increasingly intertwined with medical care, the issues of genetic privacy and doctor-patient confidentiality are being examined. Hereditary non-polyposis colorectal cancer (HNPCC) is a genetic predisposition to colorectal and certain other cancers. Effective screening that can prevent colorectal cancer is an important incentive for genetic testing. METHODS: A survey regarding the duty to warn family members of the risks associated with an HNPCC-causing mutation was mailed to 227 participants in the Ontario Familial Colon Cancer Registry (OFCCR). To our knowledge, the opinions of patients on this subject have not been reported previously in the literature. Responses were analysed quantitatively using the SAS system and qualitatively by the review of written comments. RESULTS: Completed surveys were returned by 105 participants, with a response rate of 46.3%. The majority felt a personal responsibility to warn relatives, but there was no significant agreement that doctors or genetic counsellors should have a duty to warn relatives without a patient's permission. CONCLUSIONS: Patients undergoing genetic testing for HNPCC generally understand that relatives could benefit from being informed of genetic risk, but may not be willing or able to inform each family member. Healthcare professionals should engage patients in a discussion of familial implications before genetic testing. An agreement should be formulated regarding which of the relatives should be informed. Patients should be encouraged to personally disseminate the information, given the unrealistic burden on practitioners to perform this task and patients' preference for control over the information. (+info)
Direct contact in inviting high-risk members of hereditary colon cancer families to genetic counselling and DNA testing.
(13/26)
BACKGROUND: Identification of hereditary predisposition to cancer has limited significance if not followed by efficient cancer prevention in the family. Probands are traditionally left to inform their relatives about the increased risk, but distant relatives may remain uninformed. An approach to contacting directly at-risk persons assumed to be unaware of their increased cancer risk was taken. With cancer prevention as the ultimate goal, the study was aimed at investigating attitudes towards and psychosocial consequences of this novel strategy. METHODS: In families with hereditary non-polyposis colorectal cancer (Lynch syndrome), 286 healthy adult relatives with a 50% risk of a predisposing mutation were contacted by letter. Of these, 112 participated in counselling and predictive testing. Baseline information and information obtained 1 month after the test for 73 respondents were compared with 299 corresponding subjects, approached via the proband (family-mediated approach in our previous study) in these families. RESULTS: After the contact letter, 51% consented to the study. Of these, 92% approved of the direct contact and 33% had tried to seek information. In 34% of the mutation carriers, neoplasia was identified in the first post-test colonoscopy. Although post-test fear of cancer increased among the mutation carriers and decreased among noncarriers, almost all participants were satisfied with their decision to participate, independently of their test results, parallel to the family-mediated approach. CONCLUSION: In this large-scale study, relatives in cancer families were actively contacted to inform them of the condition and genetic counselling. Their attitudes were encouraging, and the psychosocial consequences were similar to the family-mediated approach. Our results suggest the appropriateness of direct contact as an alternative method of contact in cases of life-threatening treatable disease. (+info)
Professional challenges in cancer genetic testing: who is the patient?
(14/26)