Collecting biomeasures in the Panel Study of Income Dynamics: ethical and legal concerns.
As social surveys like the Panel Study of Income Dynamics (PSID) consider adding biomeasures to their data collections, they will face complicated ethical, legal, and practical issues. Both fairly and not, research participants are likely to be more concerned about their biomeasures than about their social data. This heightened concern will force investigators to pay more attention to difficult issues such as the research participant's control over subsequent uses of the samples or data, the participant's right to withdraw from the project, protection of the research participant's privacy, return to the participant of important risk information gained through the research, some special issues involving children and families, and the process of informed consent. Investigators can navigate these issues successfully, but the effort will demand time, careful thought, and attention.
Greely
Henry T
HT
Stanford Law School, Stanford University, Stanford, California 94305-8610, USA. hgreely@stanford.edu
D002140:California; D003625:Data Collection / Q000941:ethics / Q000379:methods; D028744:Ethics Committees, Research; D032984:Ethics, Research; D005819:Genetic Markers / Q000941:ethics*; D030661:Genetic Privacy; D015894:Genome, Human; D006801:Humans; D007182:Income / Q000706:statistics & numerical data*; D007258:Informed Consent; D012942:Social Sciences / Q000941:ethics* / Q000331:legislation & jurisprudence / Q000379:methods; D014481:United States
D005819:Genetic Markers