AN ETHICAL FRAMEWORK FOR RESEARCH USING GENETIC ANCESTRY

被引:7
|
作者
Lewis, Anna C. F. [1 ,2 ]
Molina, Santiago J. [3 ]
Appelbaum, Paul S. [4 ,5 ]
Dauda, Bege [6 ]
Fuentes, Agustin [7 ]
Fullerton, Stephanie M. [8 ]
Garrison, Nanibaa A. [9 ,10 ,11 ]
Ghosh, Nayanika [12 ]
Green, Robert C. [13 ,14 ,15 ,16 ,17 ]
Hammonds, Evelynn M. [18 ,19 ]
Jeff, Janina M. [20 ]
Jones, David S. [21 ,22 ]
Kenny, Eimear E. [23 ,24 ]
Kraft, Peter [25 ]
Mauro, Madelyn [26 ]
Ori, Anil P. S. [27 ]
Panofsky, Aaron [28 ,29 ]
Sohail, Mashaal [30 ]
Neale, Benjamin M. [31 ,32 ,33 ]
Allen, Danielle S. [34 ]
机构
[1] Harvard Univ, Edmond & Lily Safra Ctr Ethics, Boston, MA USA
[2] Brigham & Womens Hosp, Dept Med, Div Genet, Boston, MA USA
[3] Northwestern Univ, Dept Sociol, Evanston, IL USA
[4] Columbia Univ, Vagelos Coll Phys & Surg, New York, NY USA
[5] New York State Psychiat Inst & Hosp, New York, NY USA
[6] Univ Penn, Ctr Global Genom & Hlth Equ, Philadelphia, PA USA
[7] Princeton Univ, Dept Anthropol, Princeton, NJ 08544 USA
[8] Univ Washington, Sch Med, Dept Bioeth & Humanities, Seattle, WA USA
[9] Univ Calif Los Angeles, Inst Soc & Genet, Los Angeles, CA 90024 USA
[10] Univ Calif Los Angeles, David Geffen Sch Med, Inst Precis Hlth, Los Angeles, CA 90024 USA
[11] Univ Calif Los Angeles, David Geffen Sch Med, Div Gen Internal Med & Hlth Serv Res, Los Angeles, CA 90024 USA
[12] Harvard Univ, Dept Hist Sci, Cambridge, MA 02138 USA
[13] Brigham & Womens Hosp, Dept Med, Div Genet, Boston, MA USA
[14] Harvard Med Sch, Boston, MA USA
[15] Broad Inst MIT & Harvard, Boston, MA USA
[16] Ariadne Labs, Populat Precis Hlth, Boston, MA USA
[17] Mass Gen Brigham Personalized Med, Cambridge, MA USA
[18] Harvard Univ, Dept Hist Sci, Cambridge, MA 02138 USA
[19] Harvard Univ, Hutchins Ctr African & African Amer Res, Cambridge, MA 02138 USA
[20] Illumina Inc, San Diego, CA USA
[21] Harvard Univ, Dept Hist Sci, Cambridge, MA 02138 USA
[22] Harvard Med Sch, Dept Global Hlth & Social Med, Boston, MA 02115 USA
[23] Icahn Sch Med Mt Sinai, Inst Genom Hlth, New York, NY USA
[24] Icahn Sch Med Mt Sinai, Dept Med & Genet & Genom Sci, New York, NY USA
[25] Harvard TH Chan Sch Publ Hlth, Program Genet Epidemiol & Stat Genet, Boston, MA USA
[26] Harvard Univ, Edmond & Lily Safra Ctr Eth, Cambridge, MA 02138 USA
[27] Icahn Sch Med Mt Sinai, Dept Med & Genet & Genom Sci, New York, NY 10029 USA
[28] Univ Calif Los Angeles, Inst Soc & Genet, Dept Publ Policy, Los Angeles, CA 90024 USA
[29] Univ Calif Los Angeles, Dept Sociol, Los Angeles, CA 90024 USA
[30] Univ Nacl Autonoma Mexico, Ctr Ciencias Genom CCG, Mexico City, DF, Mexico
[31] Broad Inst MIT & Harvard, Boston, MA USA
[32] Massachusetts Gen Hosp, Analyt & Translat Genet Unit, Boston, MA USA
[33] Massachusetts Gen Hosp, Ctr Genom Med, Boston, MA USA
[34] Harvard Univ, Edmond & Lily Safra Ctr Eth, Cambridge, MA 02138 USA
关键词
D O I
10.1353/pbm.2023.0021
中图分类号
N09 [自然科学史]; B [哲学、宗教];
学科分类号
01 ; 0101 ; 010108 ; 060207 ; 060305 ; 0712 ;
摘要
A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frame- works with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on rule following, the framework is designed to build researchers' capacities to react to the ethical dimensions of their work. The authors identify one overarching principle of intellectual freedom and responsibility, noting that freedom in all its guises comes with responsibility, and they identify and define four principles that collectively uphold researchers' intellectual responsibility: truthfulness, justice and fairness, anti-racism, and public beneficence. Researchers should bring their practices into alignment with these principles, and to aid this, the authors name three common ways research practices infringe these prin- ciples, suggest a step-by-step process for aligning research choices with the principles, provide rules of thumb for achieving alignment, and give a worked case. The essay concludes by identifying support needed by researchers to act in accord with the pro- posed framework.
引用
收藏
页码:225 / 248
页数:25
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