Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy

American Journal of Bioethics

Volumn 12, Issue 10, 2012, Pages 10-12

  Bredenoord, Annelien L ^a   van Delden, Johannes J M ^a  

^a UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ETHICS; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETIC VARIABILITY; HUMAN; INTERPERSONAL COMMUNICATION; MALE; RESEARCH SUBJECT;

GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; GENETIC VARIATION; HUMANS; MALE; RESEARCH SUBJECTS; TRUTH DISCLOSURE;

EID: 84866439499     PISSN: 15265161     EISSN: 15360075     Source Type: Journal    
DOI: 10.1080/15265161.2012.699145     Document Type: Article

References (7)

1. Bredenoord, A. L., Kroes, H. Y., Cuppen, E., Parker, M. and Van Delden, J. J. M. 2011. Disclosure of individual genetic data to research participants: The debate reconsidered. Trends in Genetics, 27(2): 41-47.
2. Bredenoord, A. L., Onland-Moret, N. C. and Van Delden, J. J. M. 2011. Feedback of individual genetic results to research participants: In favor of a qualified disclosure policy. Human Mutation, 32: 1-7.
3. Chan, B., Facio, F. M., Eidem, H., Biesecker, L. G., Hull, S. and Berkman, B. E. 2012. Genomic inheritances: Disclosing individual research results from whole-exome sequencing to deceased participants' relatives. American Journal of Bioethics, 12(10): 1-8.
4. Isasi, R., Knoppers, B. M., Andrews, P. W.for the International Stem Cell Forum Ethics Working Party. 2012. Disclosure and management of research findings in stem cell research and banking: policy statement. Regenerative Medicine, 7(3): 439-448.
5. Knoppers, B. M. and Laberge, C. 2009. Return of "accurate" and "actionable" results: Yes!. American Journal of Bioethics, 9: 107-109.
6. Thaler, R. H. and Sunstein, C. 2008. Nudge. Improving decisions about health, wealth, and happiness, New Haven, CT: Yale University Press.
7. Wolf, S. M., Crock, B. N.Van Ness, B. 2012. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine, 14(4): 361-384.