Managing familial risk in genetic testing.

@article{Taub2004ManagingFR,
  title={Managing familial risk in genetic testing.},
  author={Sara Taub and Karine Morin and Monique A. Spillman and Robert M. Sade and Frank A. Riddick},
  journal={Genetic testing},
  year={2004},
  volume={8 3},
  pages={
          356-9
        }
}
Increasing numbers of people are seeking genetic testing and uncovering information that directly concerns their biological relatives as well as themselves. This familial quality of genetic information raises ethical quandaries for physicians, particularly related to their duty of confidentiality. In this article, the American Medical Association's Council on Ethical and Judicial Affairs examines the informed consent process in the specific context of genetic testing, giving particular… 

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References

SHOWING 1-10 OF 21 REFERENCES

Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties.

TLDR
The potential legal duty of a physician to disclose or withhold genetic information from the family members of patients and the ethical standards to be invoked when considering violating the privacy of a patient or a family member are analyzed.

Genetic privacy and the law: an end to genetics exceptionalism.

TLDR
The authors argue that genetic exceptionalism is flawed for two reasons: strict protections of autonomy, privacy, and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and there is no clear demarcation separating genetic data from other health information; other health data deserve protections in a national health information infrastructure.

Genetic testing for susceptibility to adult-onset cancer. The process and content of informed consent.

TLDR
The task force recommends that informed consent for cancer susceptibility testing be an ongoing process of education and counseling in which providers elicit participant, family, and community values and disclose their own.

Code of medical ethics : current opinions with annotations

TLDR
This edition features more than 185 ethical opinions of the AMA's Council on Ethical and Judicial Affairs, including 12 new opinions in this edition on privacy, genomic research, electronic mail, errors, health-related Web sites, and cloning.

Gene mapping: using law and ethics as guides

TLDR
This volume takes the reader through all the main ethical aspects of the project to map the human genome: the question of the moral distinction between somatic and germline gene therapy; privacy and control of genetic information, including the possible consequences of genetic testing for insurance and employment, and the danger of the reinforcement of racial prejudice.

Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations

TLDR
A central question presented by genetic screening and testing is whether the genetic information so obtained is different in kind from other medical information (such as family history and cholesterol levels), and, if so, whether this means that it should receive special legal protection.

Predisposition genetic testing for late-onset disorders in adults. A position paper of the National Society of Genetic Counselors.

TLDR
Identification of cancer susceptibility genes and of genes leading to several neurogenetic disorders, including Alzheimer disease and some forms of ataxia, represents the start of a cascade of genes to be identified that confer susceptibility to adult-onset diseases.

Medical ethics: Code of Medical Ethics: Current Opinions With Annotations.

TLDR
For many, many years the last place anyone with a serious interest in the ethics of health care would be tempted to look for weighty moral analysis was the Code of Medical Ethics of the American Medical Association.

National coalition for health professional education in genetics.

TLDR
The mission of the National Coalition for Health Professional Education in Genetics is outlined, and an overview of its relationship to acute and critical care nurses is given.

Shattuck lecture--medical and societal consequences of the Human Genome Project.

  • F. Collins
  • Medicine
    The New England journal of medicine
  • 1999
The history of biology was forever altered a decade ago by the bold decision to launch a research program that would characterize in ultimate detail the complete set of genetic instructions of the