The following is a guest post by Constance A. Johnson, Legal Research Analyst with the Law Library. Connie is chair of the Law Library’s planning committee for Human Rights Day and has previously blogged about Law and Longitude, Water Rights at Star Island, and our Guide on Legal Translation.
On December 6, 2012, the Law Library celebrated International Human Rights Day with a panel discussion on Bioethics and Human Rights: Privacy and Consent. The session was moderated by Ruth Levush, Senior Foreign Law Specialist with the Law Library. Levush opened the program with a brief history of International Human Rights Day, the celebration of the adoption of the Universal Declaration of Human Rights on December 10, 1948.
The first speaker was Erin Williams, Principal Health Policy Analyst at the Mitre Corporation, whose topic was, “What Was that Form I Just Signed? Snapshot of U.S. Federal Requirements Governing Informed Consent for Medical Research.” She spoke about the range of human rights issues raised in medical research and described the harm that could result from both too little and too much research before a product is put on the market. Ms. Williams went on to summarize three major U.S. regulations that cover informed consent requirements and noted when each applies. She concluded by stating that there are some circumstances, such as behavioral research done in a privately funded research facility, that would not be covered by any of the regulations. The next speaker was Gerald Schatz, an affiliated scholar of the Center for Clinical Bioethics of Georgetown University Medical Center. His topic was “Privacy Rights and Ethical Tensions in Medicine and Research.” He argued that bioethical standards are often ignored in practice, and that the enforcement of privacy rules and consent requirements is difficult. He defined privacy as the right to be left alone and confidentiality as the right to keep personal information from becoming public. He described medical ethics as grounded in the clinical encounter between a patient and a doctor, which has the goal of benefitting the patient. A good clinical relationship requires both consent and privacy. He raised the concern that studies that collect personal information may make our identities commodities and that the cost of this is the loss of trust and the loss of human dignity.
The final speaker was Theresa Papademetriou, Senior Foreign Law Specialist with the Law Library. She spoke on “A Human Rights Dimension of Informed Consent: Sterilization of Women in Europe.” She pointed out that forced sterilization, often done without the knowledge of the woman concerned, and coerced sterilization, done under pressure, disproportionally affect women. Many of the women included in this group have been marginalized in society, including ethnic minorities such as the Roma and people who are HIV positive. Such sterilization is a violation of the human right to physical integrity and to reproductive freedom. It has been a widespread phenomenon, occurring in the U.S. as well as a number of other countries around the world. In Europe, the remedy for victims of forced sterilization is to go first to domestic courts and then to the European Court of Human Rights or to tribunals under the human rights treaty system.
The presentations were followed by a short question and answer period and a reception, provided by the Friends of the Law Library.
Update: The event video was added below.