Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing

工作场所基因组测试的伦理、法律、社会和政策影响

• 批准号: 10684009
• 负责人: CHARLES LEE
• 金额: $ 82.12万
• 依托单位: JACKSON LABORATORY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-25 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10684009
• 关键词: Address; Adult; Area; Attitude; Automobile Driving; Behavioral; Belief; Benefits and Risks; Businesses; Decision Making; Discrimination; Disease; Educational workshop; Employee; Ethics; Exhibits; Future; Genetic Privacy; Genetic Risk; Genomics; Health; Health Professional; Healthcare; Healthcare Systems; Individual; Insurance; Internet; Interview; Legal; Literature; Medical; Methods; Motivation; Perception; Persons; Policies; Policy Maker; Population; Population Heterogeneity; Prevalence; Preventive; Preventive Medicine; Privacy; Process; Professional Organizations; Research; Risk; Sales; Sampling; Service delivery model; Services; Structure; Surveys; Symptoms; Testing; Time; Wellness Program; Workplace; biobank; economic impact; ethical, legal, and social implication; expectation; follow-up; genetic information; genetic testing; health plan; improved; legal implication; policy implication; precision medicine; programs; psychologic; psychosocial; response; social implication; stakeholder perspectives; web site

PROJECT SUMMARY More than 157 million people in the US receive their healthcare insurance through employer health plans. In some cases, employers are offering voluntary workplace genomic testing (wGT) through such health plans. Indeed, a growing number of employers are considering offering such services to their employees. However, wGT raises substantial legal and policy concerns including privacy of genetic information. Given the expectation that wGT will become more prevalent in the future, there is an urgent need to understand its benefits and risks. Thus, we propose to assess the ethical, legal, social, and policy implications of wGT using a mixed-methods approach and engaging multiple stakeholders at different stages of the study. We have assembled an interdisciplinary team of national experts to study the following: 1) Examine employers' perspectives on wGT through: a) Landscape analysis to ascertain the prevalence and distribution of wGT among US companies; and b) Semi-structured interviews of key executives of a range of companies who are offering or declined to offer wGT to identify employers' motivations, challenges, and perceived benefits of implementing wGT. 2) Investigate employees' views on and response to wGT through a: a) National web-survey of employed adults to assess their attitudes and beliefs about wGT; b) Baseline web-survey of both wGT takers (n=500) and decliners (n=500) in partnership with a large healthcare system to assess perceptions of the benefits, risks, and limitations of wGT; and c) Follow-up web-survey of wGT takers to examine the psychological, behavioral, and economic impact of wGT. 3) Employ a combination of approaches, including a deliberative workshop and modified Delphi process to distill the findings of Aim 1 and 2, ultimately yielding an empirically informed normative assessment of wGT. We will engage a broad set of stakeholders including employers, employees, labor and business organizations, and policy makers regarding potential harms and benefits of wGT. Impact: The findings from this study will reveal the prominent issues and stakeholder perspectives in an understudied area of genomic testing and identify key ethical, legal, social, and policy considerations for employees and employers, and suggest practice and policy options for implementation and governance of wGT.

项目总结

项目成果

Voluntary workplace genomic testing: wellness benefit or Pandora's box?

• DOI: 10.1038/s41525-021-00276-8
• 发表时间: 2022-01-20
• 期刊: NPJ genomic medicine
• 影响因子: 5.3
• 作者: Sanghavi K;Cohn B;Prince AER;Feero WG;Ryan KA;Spector-Bagdady K;Uhlmann WR;Lee C;Roberts JS;Mathews DJH
• 通讯作者: Mathews DJH