Showing papers by "Bartha Maria Knoppers published in 2002"
TL;DR: There is not sufficient consensus among experienced genetics professionals to define serious genetic conditions for purposes of law or policy, and responses point to social and economic influences on perceptions of what constitutes a serious genetic disorder.
Abstract: The word "serious" appears in laws and policies regarding genetics services but is not defined. Genetics professionals would most likely be consulted if definitions are made. We surveyed all U.S. board-certified genetics services providers and all members of the European Society of Human Genetics (ESHG), Canadian College of Medical Geneticists (CCMG), and Ibero-American Society of Human Genetics (IASHG), using anonymous, mailed questionnaires. Respondents were asked to list three conditions they considered lethal, three that were serious but not lethal, and three that were not serious. Of 3,317 asked to respond, 1,481 (45%) returned questionnaires. Analysis was limited to responses of the 1,264 (85%) who saw patients. Respondents listed 537 conditions, with extensive overlap between categories; 46% of conditions listed as serious were also listed as not serious and 41% were listed as lethal. Respondents did not want professional societies, laws, or national ethics committees to define serious. They favored individual patients as decision makers, with the help of individual doctors. Their reasons were that genetic disorders vary in expression, individuals perceive disorders differently, professional or legal definitions could be unfair to minority groups, definitions tend to be inflexible when new treatments appear. In the United States, most would not use a definition of serious to limit reproductive services, carrier screening, or neonatal intensive care; outside the United States, more supported limitations. There is not sufficient consensus among experienced genetics professionals to define serious genetic conditions for purposes of law or policy. Responses point to social and economic influences on perceptions of what constitutes a serious genetic disorder.
79 citations
TL;DR: The past decade has witnessed a gradual move away from the status quo position of absolute confidentiality, to an intermediary position of it being the duty of the patient, to a position making it ethically permissible for the physician to warn in certain limited circumstances.
59 citations
TL;DR: Why this might be and proposed policy considerations that could help to protect the rights of these particularly vulnerable groups of research participants are discussed.
Abstract: Recent changes to the legal and ethical criteria that govern the inclusion of children and incompetent adults in genetic research are likely to lead to advances in research, but might leave the rights of the participants in this research in need of additional safeguards. Here, we discuss why this might be and propose policy considerations that could help to protect the rights of these particularly vulnerable groups of research participants.
47 citations
TL;DR: The benefits and consequences of genetic technologies for children in relation to national and international guidelines are discussed and a good understanding of the psychosocial and ethical issues associated with genetics in pediatric neurology is understood.
14 citations
18 Apr 2002
5 citations
15 Oct 2002
TL;DR: This book discusses links between medical practice and research, ethics, and codes in the regulation of human subjects research.
Abstract: Introduction
Notions and Terminology
Ties Between Medical Practice and Research
Distinctions Between Medical Practice and Research
Questionable Terminology: Therapeutic Research
Categories of Research with Human Beings
Ethics, Professional Rules, and Law
International Codes in the Regulation of Human Subjects Research
Introduction
Informed Consent
Genethics
Autonomy
Privacy
Justice
Equity of Access
Quality Control
Gen-Policies
Status
DNA Banking
Patenting
Genetic Research Involving Children
Confidentiality
Keywords:
human subjects research;
ethics
4 citations
Journal Article•
2 citations