ライブラリ登録: Guest
Ethics in Biology, Engineering and Medicine: An International Journal

ISSN 印刷: 2151-805X

ISSN オンライン: 2151-8068

SJR: 0.123

What Did You Find in My Genes? Using Participant Preferences when Revealing Biobank Individual Research Results

巻 3, 発行 1-3, 2012, pp. 57-73
DOI: 10.1615/EthicsBiologyEngMed.2013006924
Get accessGet access

要約

Biobanks provide efficient means for genetic research, but do not employ adequate measures for communicating personal health information to individual participants who contribute de-identified tissue samples. There is growing consensus that biobanks should implement systems for reporting personal health information to participants based on clinical utility. But relevant recommendations do not acknowledge the participant's interest in deciding the types of health information that she finds worth knowing. This paper addresses current biobanking protocol, and reasons for and against incorporating participant preferences into practices of delivering personal health information. It proposes a classification system for personal information discovered during research, which informed participants would use to specify their preferences before they provide tissue samples. This system would use degrees of clinical validity and utility to define categories of returnable information. Such a system would set a value threshold for personal information to prevent unnecessary costs to biobank research. In conjunction, this paper recommends refinement of participant informed consent by including genetic education and knowledge demonstration prior to tissue provision. These modifications to biobanking practices would ensure respect and empowerment for the participant, acknowledge her status as a stakeholder in genetic research, and align with democratic governance of the research endeavor.

最新号

Heroics at the End of Life in Pediatric Cardiac Intensive Care: The Role of the Intensivist in Supporting Ethical Decisions around Innovative Surgical Interventions Mithya Lewis-Newby, Emily Berkman, Douglas S. Diekema, Jonna D. Clark Transplantation for Older Patients with Hematologic Malignancies in 2021: Uncertainty and Ethics in Decision-Making H. Joachim Deeg Exploring the Hippocratic Oath: A Critical Look at Medicine's Oldest Surviving Guide to Medical Ethics D. John Doyle All Sore Eyes and Beasts: Spiritual Care Providers' Role in End-of-Life Existential Distress Debra Josephson Abrams, David B. Brecher, Douglas W. Lane The Ethics of Technology Development and Technology Use David W. Chambers Ethical Challenges of Artificial Intelligence in Health Care: A Narrative Review Aaron T. Hui, Shawn S. Ahn, Carolyn T. Lye, Jun Deng The Goods of Health Care Wade L. Robison The Ethics of Observing Low-Risk Thyroid Cancer Betty Y. Chen, Brendan C. Stack A Sampling of Engineering Ethics Conundrums Intended for Classroom Discussion D. John Doyle Toward a Better Understanding of Risk-Taking in Medical Decision Making David S. Dinhofer, Shweta Agarwal Ethical Issues Involving the Development of COVID-19 Vaccines: Role of Vaccine Development, Clinical Trials, and Speed of Peer Review in Dissuading Public Vaccine Hesitancy Leisha M. A. Martin, Gregory W. Buck Autonomy and Addictive Design Stephen Scales Ethical Implications with the Utilization of Artificial Intelligence in Dentistry Neekita Saudagar, Rafia Jabeen, Pallavi Sharma, Sean Mong, Ram M. Vaderhobli Meeting Report: 9th International Conference on Ethics in Biology, Engineering, and Medicine Subrata Saha, Pamela Saha Index, Volume 12, 2021
Begell Digital Portal Begellデジタルライブラリー 電子書籍 ジャーナル 参考文献と会報 リサーチ集 価格及び購読のポリシー Begell House 連絡先 Language English 中文 Русский Português German French Spain