01 May Is your genetic privacy at risk?

The workplace wellness industry is growing as evidenced by the many types of wellness programs offered by large employers, including IBM, Aetna, MD Anderson Cancer Center, and Google. These programs are intended to provide incentives for employees to make healthy life style choices and thus prevent or minimize health threats such as heart disease, diabetes, cancer and other conditions. Typically, the subscription to those programs is voluntary and comes with the benefit of discounted health insurance premiums. In most instances, the programs entail access to fitness centers, personal trainers, health workshops, on site doctors or nurses, or personalized consulting for nutrition and fitness programs.

The programs, as typically implemented these days, involve filling out a medical questionnaire and health assessments. While the employee gains insight into his/her current health status, the employer can at the same time get access to the personal health data of its workforce. Nevertheless, the trend is clear with showing a rise in popularity of these workplace wellness programs, and with that the key stakeholders – employees, employers, insurers – supporting them for their own specific reasons.

Wellness providers include companies such as Arivale (provides personalized data, science and tailored coaching to help optimize ones wellness), Human Longevity (Health Nucleus program which incorporates the genomics and gut microbiome testing with the whole-body imaging of an MRI), Newtopia (a stripped-down model from Aetna that performs some less extensive testing and coaching for people at risk for metabolic syndrome), Pathway Genomics, Inherent Health, among others.

“Access to de-identified genetic and health data from consenting individuals is already enabling the scientific community to invent the future of medicine, which will provide our children and grandchildren with a quality of healthcare far greater than what we have today. For example, genetic and other data are beginning to provide revolutionary insights on how to identify critical biomarkers for the earliest stages of disease transition for all common diseases. However, it is critical that we continue to ensure that the privacy of individuals is protected by laws and regulations so that they will want to volunteer and benefit from advances such as identifying the drugs that will let us reverse common diseases at their earliest stage before they ever manifest themselves as illness.”
-Lee Hood, MD, PhD, President and Co-founder, ISB; SVP & CSO, Providence St. Joseph Health

A new GOP-sponsored bill, introduced last month, may now help employers to gain access to sensitive genetic information about their employees and their families. This new bill, the “Preserving Employee Wellness Programs Act”, may also significantly increase health insurance costs to employees who opt out of participation in their employer sponsored wellness programs that involve the use and possible disclosure of genetic information.

Nancy J. Cox, PhD, the president of the American Society of Human Genetics, has recently urged members of the House Education and Workforce Committee not to move forward with consideration of this new bill due to concerns of infringement of civil rights afforded by ADA (Americans with Disabilities Act) and GINA (the Genetic information Nondiscrimination Act). Instead, workplace wellness employee health programs free of these possible health data privacy conflicts are encouraged to be promoted.

“In our NIH-funded research studies of outcomes in both diagnostic and predispositional sequencing, concerns about privacy and discrimination from employers or insurers are common reasons why potential participants decline to participate… If GINA protections around privacy are rolled back, people will be less likely to have genetic testing to diagnose life-threatening diseases in themselves or in their families, and less likely to participate in clinical research studies that are absolutely critical to understanding the long-term value of genomic medicine.”
-Robert C. Green, MD, Medical Geneticist and Professor at Harvard Medical School

“Advances in next generation sequencing now enable the accumulation of vast amounts of human genetic information allowing better prediction and diagnosis of disease. The Precision Medicine and other initiatives are sequencing the genes of millions of people thereby enabling the development of more powerful predictive health applications to enhance our understanding of the genetic and environmental factors impacting health and disease. This knowledge will further spur the rapidly growing field of personalized, proactive, and patient-driven health care and greatly benefit efforts to improve care. The spectacular advances possible through genomic analysis require people to freely allow their genes to be sequenced. To do so, their privacy and health information must be protected. Without secure safeguards, it is unlikely that people will willingly be tested and the momentum gained from translating the power of genomics to improve health will be halted. It behooves us as a nation to assure genetic privacy and protection from discrimination based on genetics. Such protection is currently afforded by ADA and GINA. Legislation such as H.R.1313 jeopardizes these protections and is dangerous to our nation’s health.”
-Ralph Snyderman, MD, Chancellor Emeritus, Duke University and James B. Duke Professor of Medicine, Duke University School of Medicine

Clearly, an adoption and implementation of this bill, as currently proposed, opens the possibility of employers gaining lawful access to employee and family medical history and personal sensitive genetic data through participation of employees in these wellness programs. It is not inconceivable that this can open the door to possible discrimination of employees based on personal genetic information, or the introduction of higher health care costs to employees opting out of these company sponsored wellness plans. Lastly, it may have a wider impact on the adoption of genetic testing a central element of precision medicine.

This is of substantial relevance and therefore we invite you to attend PMWC Duke, taking place in May 2017 as we have an array of relevant talks that will touch upon this subject, including:

A discussion of legal and social challenges of data privacy issues from a variety of perspectives including the public opinion.

A discussion around consistent and predictable health insurance coverage.
Session chair: Lee Newcomer

A discussion of the challenges of creating a universal approach to data sharing versus private and/or proprietary approaches that are trying to differentiate themselves.
Session chair:  Kathy Giusti (MMRF)
Panel includes Dr. Bill Dalton (M2Gen), Dr. Robert Califf (Duke University and former FDA Commissioner), Dr. Richard Klauser (GRAIL)

A talk from Human Longevity, a wellness provider company.
Session chair: Dr. Brad Perkins (Human Longevity)
Additional Speaker: Dr. Yaniv Erlich (Columbia University)

Find the full speaker and session lists on our website.

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