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. 2008 Summer;36(2):286-91, 212.
doi: 10.1111/j.1748-720X.2008.00271.x.

Incidental findings in genetics research using archived DNA

Ellen Wright Clayton  1
Affiliations

Incidental findings in genetics research using archived DNA

Ellen Wright Clayton. J Law Med Ethics. 2008 Summer.

Abstract

Despite calls by some commentators for disclosing incidental findings in genetics research, several factors weigh in favor of caution. The technology of genetics has the power to uncover a vast array of information. The most potent argument for restraint in disclosure is that much research is pursued without consent so that the individual participant may not know that research is being conducted at all. Often the work is done by investigators and at institutions with which the person has no prior contact. Past practice is also relevant; genetics researchers historically have chosen not to disclose incidental findings, of which misattributed paternity and pleiotropic alleles such as ApoE have been the most common. Many people choose not to have genetic tests when given a choice. It may be desirable to discuss the topic of incidental findings when consent for research is obtained, but given the risk of unwanted surprise when there has been no prior discussion, the potential utility of incidental findings should be very high before they are even offered to individuals.

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Figure 1. Archiving and Sharing DNA
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References

    1. Campbell EG, et al. Data Withholding in Academic Genetics: Evidence from a National Survey. JAMA. 2002;287(4):473–480. - PubMed
    1. National Institutes of Health. Request for Information (RFI): Proposed Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) 2006. available at < http://grants.nih.gov/grants/guide/notice-files/NOT-OD-06-094.html > (last visited February 12, 2008)
    1. NIH Pharmacogenetics Research Network. Pharmacogenetics and Pharmacogenomics Knowledge Base. 2007. available at < http://www.nigms.nih.gov/Initiatives/PGRN/> (last visited February 12, 2008)
    1. Pulley JM, et al. Attitudes and Perceptions of Patients towards Methods of Establishing a DNA Biobank. Cell & Tissue Banking. 2007;8(3):233–241. - PubMed
    1. National Action Plan for Breast Cancer. Consent Form for Use of Tissue for Research. 1997. available at < www.4woman.gov/napbc/catalog.wci/napbc/consent.htm > (last visited February 12, 2008);
    2. National Bioethics Advisory Commission. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance. Vol. 1. Rockville, MD: 1999.

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