In living kidney donation, transplant professionals consider the rights of a living kidney donor and recipient to keep their personal health information confidential and the need to disclose this information to the other for informed consent. In incompatible kidney exchange, personal health information from multiple living donors and recipients may affect decision making and outcomes.
We conducted a survey to understand and compare the preferences of potential donors (n = 43), potential recipients (n = 73), and health professionals (n = 41) toward sharing personal health information (in total 157 individuals).
When considering traditional live-donor transplantation, donors and recipients generally agreed that a recipient's health information should be shared with the donor (86 and 80%, respectively) and that a donor's information should be shared with the recipient (97 and 89%, respectively). When considering incompatible kidney exchange, donors and recipients generally agreed that a recipient's information should be shared with all donors and recipients involved in the transplant (85 and 85%, respectively) and that a donor's information should also be shared with all involved (95 and 90%, respectively). These results were contrary to attitudes expressed by transplant professionals, who frequently disagreed about whether such information should be shared.
Future policies and practice could facilitate greater sharing of personal health information in living kidney donation. This requires a consideration of which information is relevant, how to put it in context, and a plan to obtain consent from all concerned.
Cites: Am J Transplant. 2003 Jul;3(7):830-412814474
Cites: Am J Transplant. 2009 Jul;9(7):1558-7319459792
Cites: Transplantation. 2004 Aug 27;78(4):491-215446304
Cites: Lancet. 1992 Oct 3;340(8823):807-101357243
Cites: Can J Surg. 2004 Dec;47(6):408-1315646438
Cites: Transplantation. 2005 Mar 27;79(6 Suppl):S53-6615785361
Cites: HIV Med. 2006 Apr;7(3):133-916494626
Cites: Ann Intern Med. 2006 Aug 1;145(3):185-9616880460
In the era of chronic disease, we are challenged to find therapies that provide symptomatic relief and ideally, alter the course of the underlying disease. In Alzheimer's disease (AD), these issues are complicated by the disease itself, which affects the subject's decision-making capacity for participation in the research. According to established ethical guidelines it is clear that individuals with impaired capacity may participate in research and their risk should be no greater than that which the individual would have in day to day activities with anticipation of benefits within that realm. Decision making processes are complex and involve proxies who themselves have biases about their loved one and the potential for participating in the research. Newer disease-modifying approaches such as immunotherapy have potential for affecting the course of the underlying disease but with greater risk of more significant side effects. Ideally the health care of the subjects is not disadvantaged by research participation. At the same time, trials of potentially riskier therapy are relevant in subjects with the disease. Research for subjects with AD must have appropriate safeguards in place to enable effective progress in innovative therapy for a vulnerable, often elderly population. Recommendations are made which could further our capacity to undertake ethical research in the AD population.
Current international legal instruments recognise the use of advance directives to carry on the will of the dementing research participant beyond the boundaries of her present legal capacity. Advance directives are gaining greater recognition in patient care than in medical research, where their legal status is still somewhat unclear. In particular, the three major international documents on medical research - the Council of Europe Convention on Biomedicine and Human Rights (ETS 164), its Additional Protocol on Biomedical Research (ETS 195), and Directive 2001/20/EC on Clinical Trials on Medicinal Products--give conflicting messages on the legal status of advance directives in medical research. This article examines the provisions in these documents and their national applications in Finland and the United Kingdom.
In this paper, the authors (two clinicians with specialized practices in child and adolescent eating disorders and a lawyer who practices health law in Ontario, Canada) review pertinent aspects of clinical capacity assessment, with elaboration of the specific unique and complex issues which shape that assessment in children and adolescents with eating disorders. The relevant Ontario legislation and institutional framework governing consent and capacity in children and adolescents are reviewed. The literature on involuntary treatment and consent and capacity in patients with eating disorders is reviewed. Specific cases involving child and adolescent patients with eating disorders that have been heard by the Ontario Consent and Capacity Board (OCCB) in the past decade are discussed in order to elucidate the Board's views of consent and capacity in this vulnerable and challenging patient population. Strategies to support clinicians' therapeutic alliances with their patients while both are going through what can be a lengthy and potentially adversarial-seeming legal process are also discussed.