Literature DB >> 9759098

The evolving duty to disclose the presence of genetic disease to relatives.

L J Deftos1.   

Abstract

Under the aegis of the Human Genome Project, research laboratories are identifying the genetic bases of human diseases almost daily. This explosion in molecular biology has raised many medical-legal issues about genetic information, such as privacy, discrimination, and insurability. Less appreciated is another issue that faces physicians who deal with genetic information in their practices--their duty to disclose a genetic disease to relatives of their patients who have the disease. Few cases have addressed the issue directly, and there has been little statutory and policy development in this area. However, because a physician's diagnosis of a genetic disease could have such a profound impact on the patient's relatives, there is a developing duty to consider disclosing genetic information to relatives. The case law and policy that support such disclosure reflect the evolution of medicine and the law away from paternalism toward an expanded concept of legal and moral duty. Since genetic information is presumed to be confidential by the law, as is essentially all medical information, guidelines need be developed regarding a physician's duty to disclose a genetic disease to a patient's relatives. These guidelines should consider the patient, the genetic test, the disease, and the third-party relative. Disclosure should be considered for a disease that is serious or fatal, treatable or curable, and transmitted dominantly with high penetrance. Specifics notwithstanding, these policies should be developed by physicians who care for patients and their families, not by lawyers and ethicists with no clinical training.

Entities:  

Keywords:  Genetics and Reproduction; Legal Approach; Professional Patient Relationship

Mesh:

Year:  1998        PMID: 9759098     DOI: 10.1097/00001888-199809000-00014

Source DB:  PubMed          Journal:  Acad Med        ISSN: 1040-2446            Impact factor:   6.893


  5 in total

1.  Genetic diagnosis, confidentiality and counseling: an ethics committee's potential deliberations about the do's and don'ts.

Authors:  Bert Gordijn
Journal:  HEC Forum       Date:  2007-12

2.  What's the harm? Genetic counselor perceptions of adverse effects of genetics service provision by non-genetics professionals.

Authors:  Tracy A Bensend; Patricia McCarthy Veach; Kristin B Niendorf
Journal:  J Genet Couns       Date:  2013-06-12       Impact factor: 2.537

3.  Physicians' perspectives on the uncertainties and implications of chromosomal microarray testing of children and families.

Authors:  M Reiff; K Ross; S Mulchandani; K J Propert; R E Pyeritz; N B Spinner; B A Bernhardt
Journal:  Clin Genet       Date:  2012-09-18       Impact factor: 4.438

Review 4.  Guidelines for disclosing genetic information to family members: from development to use.

Authors:  Béatrice Godard; Thierry Hurlimann; Martin Letendre; Nathalie Egalité
Journal:  Fam Cancer       Date:  2006       Impact factor: 2.375

Review 5.  Communicating genetic information: a difficult challenge for future pediatricians.

Authors:  Eduardo Rosas-Blum; Pratibha Shirsat; Marie Leiner
Journal:  BMC Med Educ       Date:  2007-06-18       Impact factor: 2.463

  5 in total

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