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With Cutting-Edge Benefits Come Bioethical Challenges

Suzanne F. Delbanco is the executive director of Catalyst for Payment Reform (CPR), an independent, non-profit corporation working to catalyze employers, public purchasers, and others to implement strategies that produce higher-value healthcare and improve the functioning of the healthcare marketplace. In addition to her duties at CPR, Suzanne serves on the advisory board of the Blue Cross Blue Shield Institute. Previously, Suzanne was the founding CEO of The Leapfrog Group. She holds a PhD in Public Policy from the Goldman School of Public Policy and a MPH from the School of Public Health at the University of California, Berkeley.
This article was coauthored by Lea Tessitore, MBA, MSB, senior project and research manager, and Ryan Olmstead, MPH, director of member services, both of Catalyst for Payment Reform.

As disruptive medical technologies emerge, often unanticipated, bioethical issues arise, presenting challenges for employers navigating what benefits to offer to their employees.

This isn’t a recent phenomenon. In 1928, the invention of the ventilator brought forth new questions in medicine and bioethics causing a need to redefine death. With the ventilator and its ability to sustain cardiac functions, a definition of death dependent on the irreversible stoppage of the heart and respiratory functioning no longer seemed viable. The debate that ensued gave rise to the now widely accepted “whole brain” definition of death, which occurs with the irreversible loss of function of the higher brain and the brainstem. The invention of the ventilator caused bioethicists, physicians, and lay people to reassess the ethical, legal, and clinical meaning of death.

The field of genetics is now playing the same disruptive role as the ventilator. Since the successful mapping of the human genome in 2003, the field of genetics has rapidly advanced, bringing with it an explosion of genetic tests for diseases such as breast cancer, Down syndrome, cystic fibrosis, Huntington disease, muscular dystrophy, sickle cell anemia, and hemophilia. However, the use of genes to predict, diagnose, and treat disease presents more bioethical and medical issues than may initially be apparent. Payers, employers, and other healthcare purchasers looking to offer genetic testing to the populations for whom they buy healthcare services should tread carefully.

Ethical Principles
To assess the benefits and risks of genetic testing, payers and purchasers can leverage the groundbreaking Belmont Report, written by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in 1979. The report identifies the 4 ethical principles that should underlie research on human subjects, as well as, by extension, serve as guiding principles for healthcare and bioethics. Those principles are autonomy, beneficence, nonmaleficence, and justice.

According to the principle of autonomy, the decisions of autonomous individuals should be respected. Autonomous individuals are those with full capacity, enabling them to engage in rational decision-making and weigh costs and benefits, and who have freedom of choice. Autonomous individuals should be given the full information they need to give informed consent and make informed choices.

When it comes to genetic testing, employers adhering to the principle of autonomy should ensure that employees understand what genetic testing is, what it entails, and the types of results it can generate, including incidental findings and their potential impact on the employee and their family members. Some employees will question why their employer is offering genetic testing and what the employer may do with their genetic information. Employers should disclose their reasoning for offering the benefit and the existing regulations in place, such as the Genetic Information Non-Discrimination Act (GINA), to protect employees’ genetic data.

Employers should also disclose that genetic test results can disadvantage other types of insurance coverage; GINA is only applicable to health insurance and does not prevent disclosure of genetic information when an individual seeks other types of insurance, such as life insurance, disability insurance or long-term care insurance.

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