The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced (...) a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received. (shrink)

It is broadly held that confidentiality may be breached when doing so can avert grave harm to a third party. This essay challenges the conventional wisdom. Neither legal duties, personal morality nor personal values are sufficient to ground professional obligations. A methodology is developed drawing on core professional values, the nature of professions, and the justification for distinct professional obligations. Though doctors have a professional obligation to prevent public peril, they do not honor it by breaching confidentiality. It is shown (...) how the protective purpose to be furthered by reporting is defeated by the practice of reporting. Hence there is no conflict between confidentiality and the professional responsibility to protect endangered third parties. *A longer version of this article will appear as “Medical Confidentiality” in The Blackwell Guide to Bioethics, ed. R. Rhodes et al. Oxford, UK: Blackwell, 2006. (shrink)

some 20 years. Yet the ethical issues surrounding the disclosure of positive HIV status have not been examined comprehensively. This report examines the ethics behind the disclosure of HIV-positive status primarily or individuals to their sex partners, and for health care practitioners to a patient’s sex partner when the patient is unwilling to disclose. Relevant rights and ethical principles are analysed, including the rights to: self-preservation; privacy and confidentiality; and the bioethical principles of respect for autonomy, beneficence, non-maleficence, and justice. (...) Historic and contemporary individual rights that people living with HIV have regarding disclosure are emphasised, especially in adverse circumstances, where ethics can support non-disclosure based on the right to self-preservation. Rights declarations and current disclosure guidelines for health care practitioners from several international and South African medical organisations also are reviewed. Of key importance to disclosure decisions are the specific situations of individuals in climates rife with stigma toward, and discrimination against, PLHIV, existing more or less worldwide. The potential negative impacts of disclosure are the basis for disclosure decisions of PLHIV. Research study results show that the negative impacts of disclosure can be severe for individuals, ranging from divorce or abandonment to community ostracism and even to murder. Relevant current theories of social justice related to HIV disclosure also are discussed. A conclusion is reached that, by decreasing stigma and discrimination against PLHIV and protecting individual rights related to HIV disclosure, prevention behaviours will be practised more widely, including ‘positive prevention’ by PLHIV and higher rates of disclosure. The eventual result will be the long-term public health goal of decreased spread of HIV. (shrink)