Open AccessIncidental Findings in Genetics Research Using Archived DNA
Author(s) -
Clayton Ellen Wright
Publication year - 2008
Publication title -
the journal of law, medicine & ethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.515
H-Index - 57
eISSN - 1748-720X
pISSN - 1073-1105
DOI - 10.1111/j.1748-720x.2008.00271.x
Subject(s) - surprise , informed consent , psychology , medical genetics , argument (complex analysis) , genetics , social psychology , medicine , biology , alternative medicine , pathology , gene
Despite calls by some commentators for disclosing incidental fndings 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 fndings, 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 fndings 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 fndings should be very high before they are even ofered to individuals.