Genetic testing for susceptibility to adult-onset cancer: the process and content of informed consent
Article Abstract:
A task force of the Cancer Genetics Studies Consortium has published guidelines for eliciting informed consent when patients undergo genetic testing for cancer. At least 50 different cancers can be hereditary and many family members may choose to be tested for genetic mutations that predispose them to cancer. It is best to allow informed consent to be an ongoing process, using educational formats such as individual or group discussions, brochures and pamphlets or videos. Patients should be told the limitations of the test and the possible consequences of a positive test.
Publication Name: JAMA, The Journal of the American Medical Association
Subject: Health
ISSN: 0098-7484
Year: 1997
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Privacy and confidentiality in the publication of pedigrees: a survey of investigators and biomedical journals
Article Abstract:
Many genetics researchers do not ask families for permission before publishing their pedigree and may also alter the pedigree in ways that could impair the integrity of the data. This was the conclusion of a survey of 177 genetics researchers and the editors of 26 biomedical journals. Seventy-eight percent of the researchers do not obtain informed consent to publish the pedigree and 36% said family members were never even told the pedigree would be published. Nineteen percent altered the pedigree and almost half did not tell the journal editors.
Publication Name: JAMA, The Journal of the American Medical Association
Subject: Health
ISSN: 0098-7484
Year: 1998
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Protecting the Privacy of Family Members in Survey and Pedigree Research
Article Abstract:
Researchers conducting genetic research on humans do not necessarily need to obtain informed consent from the family members of the patients in the study as long as they follow specific criteria. These criteria were developed after the FDA suspended human research studies at Virginia Commonwealth University.
Publication Name: JAMA, The Journal of the American Medical Association
Subject: Health
ISSN: 0098-7484
Year: 2001
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