Rachele Hendricks-Sturrup, DHSc, MSc, MA - Harvard Pilgrim Health Care Institute and Harvard Medical School
ELSIconversations - February 26, 2021
Employers are increasingly partnering with direct-to-consumer (DTC) genetic testing companies and other unregulated companies that generate, collect, and process sensitive health information to offer personalized wellness products as a workplace wellness benefit. Countering claims about the benefits of these programs are concerns about employee health privacy and discrimination based on health factors or status. These concerns are legally grounded in the fact that 1) employers and DTC genetic testing companies are not covered under the Health Insurance Portability and Accountability Act, and 2) the United States (US) Supreme Court, in AARP v. EEOC, rejected regulations around wellness program incentive limits under the Genetic Information Nondiscrimination Act and Americans with Disabilities Act. This study qualitatively explored the concerns of public and legislative stakeholders to determine themes and best practices to overcome those concerns. Qualitative analysis was performed using NVivo software. A second coder was used to assess interrater reliability. Key themes centered on promoting a culture of trust and wellness. Best policy practices within these themes were : 1) have transparent and prominent data standards and practices, 2) uphold employee privacy and nondiscrimination standards, 3) remove penalties, 4) reward healthy behavior, and 5) make program benefits accessible. Employers, DTC genetic testing companies, and policymakers should consider these themes and best practices in the current absence of federal regulations on nondiscriminatory workplace wellness programs.
Tags
Videos in Series

ELSIconversations Series 1 - Winter/Spring 2021 - A Prospectus on Ethical Issues in the Context of Collaborations Between Academic and Non-academic Institutions on Genetics Research

ELSIconversations Series 1 - Winter/Spring 2021 - Sexual and Gender Minorities’ Perspectives on Genetic Privacy and Identity in Research

ELSIconversations Series 1 - Winter/Spring 2021 - Part 2. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program

ELSIconversations Series 1 - Winter/Spring 2021 - Part 1. Ethical, Legal and Social Implications (ELSI) on the Frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program

ELSIconversations Series 1 - Winter/Spring 2021 - Platform Heals? Ethical Issues in Direct-to-consumer Telepharmacies

ELSIconversations Series 1 - Winter/Spring 2021 - Democratic approaches to precision medicine and genetics research: comparing inclusiveness and effectiveness of PPI practices to the pursuit of the public good

ELSIconversations Series 1 - Winter/Spring 2021 - Developing Pathways for Community-led Research with Big Data: A Content Analysis of Stakeholder Interviews

ELSIconversations Series 1 - Winter/Spring 2021 - When Dogs Play Cards: Interviews with Scientists, Researchers, and Oversight Committee Members on Ethical Guidelines for Human-Animal Chimera Research

ELSIconversations Series 1 - Winter/Spring 2021 - What does ‘respect for persons’ really mean? Practical considerations for demonstrating respect in genomics research

ELSIconversations Series 1 - Winter/Spring 2021 - Part 4. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Racial and Ethnic Classification in the Clinic: Is it Just?

ELSIconversations Series 1 - Winter/Spring 2021 - Part 3. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Defining the Critical Components of Informed Consent for Genetic Testing

ELSIconversations Series 1 - Winter/Spring 2021 - Part 2. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Patient and family preferences on direct contact by a health system to invite cascade screening

ELSIconversations Series 1 - Winter/Spring 2021 - Part 1. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges

ELSIconversations Series 1 - Winter/Spring 2021 - Which Public, What Comments? An Analysis of Public Comments on Human-Animal Chimera Research Submitted to the National Institutes of Health

ELSIconversations Series 1 - Winter/Spring 2021 - Using an implementation research tool to guide the implementation of non-invasive prenatal screening

ELSIconversations Series 1 - Winter/Spring 2021 - Direct-to-Consumer Genetic Testing: Public Perspectives and Considerations Regarding Ancestry and Kinship
