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Results for “Duty to Recontact”

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At least 19 recordsLinked to original sources
PubMed1999

The duty to recontact: attitudes of genetics service providers.

The term "duty to recontact" refers to the possible ethical and/or legal obligation of genetics service providers (GSPs) to recontact former patients about advances in research that might be relevant to them. Although currently this practice is not part of standard care, some argue that such an obligation may be established in the future. Little information is available, however, on the implications of this requirement, from the point of view of GSPs. To explore the opinions of genetics professionals on this issue, we sent a self-administered questionnaire to 1,000 randomly selected U.S. and Canadian members of the American Society of Human Genetics. We received 252 completed questionnaires. The major categories of respondents were physician geneticist (41%), Ph.D. geneticist (30%), and genetic counselor (18%); 72% of the total stated that they see patients. Respondents indicated that responsibility for staying in contact should be shared between health professionals and patients. Respondents were divided about whether recontacting patients should be the standard of care: 46% answered yes, 43% answered no, and 11% did not know. Those answering yes included 44% of physician geneticists, 53% of Ph.D. geneticists, and 31% of genetic counselors; answers were statistically independent of position or country of practice but were dependent on whether the respondent sees patients (43% answered yes) or not (54% answered yes). There also was a lack of consensus about the possible benefits and burdens of recontacting patients and about various alternative methods of informing patients about research advances. Analysis of qualitative data suggested that most respondents consider recontacting patients an ethically desirable, but not feasible, goal. Points to consider in the future development of guidelines for practice are presented.

Data Collection↗
PubMed2004

Expanding the physician's duty of care: a duty to recontact?

This article addresses the ethical and legal issues surrounding the possibility of a "duty to recontact" patients concerning new genetic developments. The text examines the rationale of this concept, the conditions required for the creation of such a duty and who should be bound by it. While this "duty to recontact" has yet to be developed, the predictive familial dimensions of genetic information, however, may lead policy makers to favour such a duty. Professional organizations should begin to assess the implications of the genetic revolution on patient management and physicians' continuing education.

Biomedical Research↗
PubMed2000

Misusing informed consent: a critique of limitations on research subjects' access to genetic research results.

Express denials of access to genetic research results are being drafted into consent instruments. Some commentators suggest that the principle of beneficence can justify such a denial of access. This paper provides an ethical and legal critique of the use of consent instruments to disclaim responsibility for on-going disclosure by genetic researchers. Currently, the law of torts provides only weak protection for on-going disclosure for research subjects. The most substantive rights are to be found in the law of fiduciary obligations. The author concludes that, notwithstanding arguments to the contrary, there should be a presumption of disclosure in genetic research, unless the research subject elects otherwise. The author outlines one possible exception to this general presumption.

Canada↗
PubMed1996

The Human Genome Project and the clinician.

The Florida Supreme Court's decision in Pate v Threlkel is an early warning sing of the massive impact human genome research will have on medical practice. Genetic screening is a scientific tool whose widespread use in clinical medicine will expand due to the combined influences of the federally funded Human Genome Project, biotechnology market forces, and corporate and societal pressures to both use and further develop the technique. Once testing becomes cost-effective, clinicians, by virtue of their position as "knowledgeable professionals" and as the primary source of health information for patients with genetic disorders, will be required to act as gatekeepers to the genetic heritage of their patients. This will seriously impact the legal definitions of reasonable care, a physician's duty to warn, the concept of informed consent, and the confidentiality of medical records.

Biotechnology↗
PubMed2001

Ethical, legal, and practical concerns about recontacting patients to inform them of new information: the case in medical genetics.

There is a consensus among medical geneticists that it is desirable to recontact patients as new information becomes available. Furthermore, some have suggested that there are legal arguments to support an obligation, creating a duty to recontact. Thus far much of the discussion among medical geneticists has focused on the practical concerns of implementing such a policy. However, we think that any such policy raises a number of important ethical concerns that must first be considered. Furthermore, there has not been a careful evaluation of the legal precedents that may reflect on a hypothetical duty to recontact. In this paper we first present an analysis of the scope of approaches and issues to be addressed in the development of ethical policy on this question. Secondly, we examine whether there is a legal obligation to recontact former patients about advances in genetics, as well as the legal implications if such a policy were to be adopted. Finally, we consider some of the functional and resource implications of adopting a policy of recontact. Our goal is to provide a framework for further discussion of this question and to stimulate further debate and research.

Data Collection↗
PubMed1999

Archived specimens: a platform for discussion.

To facilitate discussion, this paper describes various types of collections of specimens, their uses in research, types of identifiers, requirements for informed consent, third-party access to samples, recontact, and controversial ethical and social issues. There is need for public opinion research on people's views of these issues, with particular attention to the views of minority groups.

Biological Specimen Banks↗
PubMed2006

The emergence of an ethical duty to disclose genetic research results: international perspectives.

The last decade has witnessed the emergence of international ethics guidelines discussing the importance of disclosing global and also, in certain circumstances, individual genetic research results to participants. This discussion is all the more important considering the advent of pharmacogenomics and the increasing incidence of 'translational' genetic research in the post-genomic era. We surveyed both the literature and the ethical guidelines using selective keywords. We then analyzed our data using a qualitative method approach and singled out countries or policies that were representative of certain positions. From our findings, we conclude that at the international level, there now exists an ethical duty to return individual genetic research results subject to the existence of proof of validity, significance and benefit. Even where these criteria are met, the right of the research participant not to know also has to be taken into consideration. The existence of an ethical duty to return individual genetic research results begs several other questions: Who should have the responsibility of disclosing such results and when? To whom should the results be disclosed? How? Finally, will this ethical 'imperative' become a legally recognized duty as well?

Duty to Recontact↗
PubMedDate not supplied

Ethics in population-based genetic research.

Population-based genetic research, including genetic epidemiology, shows tremendous potential to elucidate the role of genes as causal factors in complex and common human diseases. Like all research with human subjects, full realization of these benefits requires careful attention to its ethical conduct, establishing an appropriate balance between individual protections and the advancement of scientific and medical knowledge. This article reviews the growing literature on genetics research and ethics to describe some of the fundamental ethical issues in population-based genetics research, including research design, recruitment and informed consent, and dealing with research results. Its focus is on areas where consensus is forming and where future work is needed.

Duty to Recontact↗