Literature DB >> 33325811

Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.

Sandra Soo-Jin Lee1.   

Abstract

Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improve human health. Drawing on anthropological framings of the "gift," this paper contextualizes participation in precision medicine as inextricable from social relationships and their ongoing ethical obligations. Going beyond altruism, reframing biospecimen and data collection in terms of socially regulated gift-giving recovers questions of responsibility and care. As opposed to conceiving participation in terms of donations that elide clinical labor critical to precision medicine, the gift metaphor underscores ethical commitments to reciprocity and responsibility. This demands confronting inequities in precision medicine, such as systemic bias and lack of affordability and access. A focus on justice in precision medicine that recognizes the sociality of the gift is a critical frontier for bioethics.

Entities:  

Keywords:  Anthropology; genetic research; human subjects research; race and culture/ethnicity; research ethics; social science research

Mesh:

Year:  2020        PMID: 33325811      PMCID: PMC8629351          DOI: 10.1080/15265161.2020.1851813

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN: 1526-5161            Impact factor:   11.229


  35 in total

1.  Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).

Authors:  Christine Weiner
Journal:  Am J Epidemiol       Date:  2014-08-22       Impact factor: 4.897

2.  The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation.

Authors:  G Corbie-Smith
Journal:  Am J Med Sci       Date:  1999-01       Impact factor: 2.378

3.  Why and How Bioethics Must Turn toward Justice: A Modest Proposal.

Authors:  Jenny Reardon
Journal:  Hastings Cent Rep       Date:  2020-05       Impact factor: 2.683

4.  Genomics is failing on diversity.

Authors:  Alice B Popejoy; Stephanie M Fullerton
Journal:  Nature       Date:  2016-10-13       Impact factor: 49.962

5.  Structural Racism, Social Risk Factors, and Covid-19 - A Dangerous Convergence for Black Americans.

Authors:  Leonard E Egede; Rebekah J Walker
Journal:  N Engl J Med       Date:  2020-07-22       Impact factor: 91.245

6.  Patient perspectives on group benefits and harms in genetic research.

Authors:  A J Goldenberg; S C Hull; B S Wilfond; R R Sharp
Journal:  Public Health Genomics       Date:  2010-10-08       Impact factor: 2.000

7.  Biobanking for research: a survey of patient population attitudes and understanding.

Authors:  Alanna Kulchak Rahm; Michelle Wrenn; Nikki M Carroll; Heather Spencer Feigelson
Journal:  J Community Genet       Date:  2013-04-20

8.  Public trust in health information sharing: implications for biobanking and electronic health record systems.

Authors:  Jodyn Platt; Sharon Kardia
Journal:  J Pers Med       Date:  2015-02-03

Review 9.  Overview of the BioBank Japan Project: Study design and profile.

Authors:  Akiko Nagai; Makoto Hirata; Yoichiro Kamatani; Kaori Muto; Koichi Matsuda; Yutaka Kiyohara; Toshiharu Ninomiya; Akiko Tamakoshi; Zentaro Yamagata; Taisei Mushiroda; Yoshinori Murakami; Koichiro Yuji; Yoichi Furukawa; Hitoshi Zembutsu; Toshihiro Tanaka; Yozo Ohnishi; Yusuke Nakamura; Michiaki Kubo
Journal:  J Epidemiol       Date:  2017-02-08       Impact factor: 3.211

10.  Spinal Muscular Atrophy in the Black South African Population: A Matter of Rearrangement?

Authors:  Elana Vorster; Fahmida B Essop; John L Rodda; Amanda Krause
Journal:  Front Genet       Date:  2020-02-13       Impact factor: 4.599

View more
  7 in total

Review 1.  The Ethics of Consent in a Shifting Genomic Ecosystem.

Authors:  Sandra Soo-Jin Lee
Journal:  Annu Rev Biomed Data Sci       Date:  2021-07-20

2.  The Underdeveloped "Gift": Ethics in Implementing Precision Medicine Research.

Authors:  Amy A Blumling; Kristin E Childers-Buschle; John A Lynch; Melanie F Myers; Michelle L McGowan
Journal:  Am J Bioeth       Date:  2021-04       Impact factor: 11.229

3.  Response to Open Peer Commentaries: Distinguishing the "Gift" from "Donation" as a Path toward Reciprocity and Relational Ethics.

Authors:  Sandra Soo-Jin Lee
Journal:  Am J Bioeth       Date:  2021-04       Impact factor: 11.229

4.  Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis.

Authors:  Andrew G Shuman; Kayte Spector-Bagdady; Madison Kent; Chris D Krenz; Collin Brummel; Paul L Swiecicki; J Chad Brenner
Journal:  JMIR Cancer       Date:  2022-05-03

5.  The Articulation of Genomics, Mestizaje, and Indigenous Identities in Chile: A Case Study of the Social Implications of Genomic Research in Light of Current Research Practices.

Authors:  Constanza P Silva; Constanza de la Fuente Castro; Tomás González Zarzar; Maanasa Raghavan; Ayelén Tonko-Huenucoy; Felipe I Martínez; Nicolás Montalva
Journal:  Front Genet       Date:  2022-03-03       Impact factor: 4.599

6.  Clinicians' and Researchers' Views on Precision Medicine in Chronic Inflammation: Practices, Benefits and Challenges.

Authors:  Anke Erdmann; Christoph Rehmann-Sutter; Claudia Bozzaro
Journal:  J Pers Med       Date:  2022-04-03

7.  What does engagement mean to participants in longitudinal cohort studies? A qualitative study.

Authors:  Cynthia A Ochieng; Joel T Minion; Andrew Turner; Mwenza Blell; Madeleine J Murtagh
Journal:  BMC Med Ethics       Date:  2021-06-24       Impact factor: 2.652

  7 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.