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A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness

Rachele M Hendricks-Sturrup1, Kathy L Cerminara2, Christine Y Lu1

  • 1Department of Population Medicine, Harvard Pilgrim Health Care Institute, Harvard Medical School, Boston, MA 02215, USA.

Journal of Personalized Medicine
|December 8, 2020
PubMed
Summary

Employers offering workplace wellness programs must prioritize employee privacy and nondiscrimination. Key recommendations include transparent data practices and accessible benefits, especially given the lack of broad regulations for consumer health data.

Keywords:
direct-to-consumer screening and testinghealth policymobile applicationspersonalized medicinewellness programs

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Area of Science:

  • Health Law
  • Workplace Wellness
  • Data Privacy

Background:

  • Employers increasingly offer personalized wellness products as workplace benefits.
  • This trend involves direct-to-consumer (DTC) genetic testing and digital health companies, raising privacy concerns.
  • Existing regulations for sensitive health information in wellness programs are often insufficient.

Purpose of the Study:

  • To explore stakeholder concerns regarding employee health privacy and discrimination in workplace wellness programs.
  • To develop best practices for privacy and nondiscrimination in these programs.
  • To inform employers, DTC companies, and policymakers in the absence of comprehensive regulations.

Main Methods:

  • Qualitative exploration of concerns and opinions from public and legislative stakeholders in the US.
  • Identification of key themes and development of best practices.

Main Results:

  • A central theme emerged: promoting a culture of trust and wellness.
  • Identified best practices include transparent data standards, upholding privacy, removing penalties for biometric outcomes, rewarding healthy behaviors, and ensuring accessibility.

Conclusions:

  • Establishing transparent data practices and prioritizing employee privacy are crucial for nondiscriminatory workplace wellness programs.
  • Implementing recommended best practices can mitigate risks associated with sensitive health data and promote a healthier, more equitable work environment.