Ethical Dilemmas Arise from Genetic Testing for Cancer

While genetic testing for cancer has some obvious benefits, it also creates ethical dilemmas in many cases.
When it comes to genetic mutations that can lead to cancer, “Knowledge is power. This information can be used to preserve your health.”

That’s the bottom line according to Lisa Schlager, vice president of community affairs and public policy for Facing Our Risk of Cancer Empowered (FORCE), an organization that advocates for people affected by hereditary breast, ovarian and related cancers.

Still, identifying meaningful mutations and using those findings to promote cancer prevention and treatment — without causing harm along the way — will require the nation’s legislative and medical leaders to work through a number of difficult issues, agreed Schlager and two other experts who participated in a recent panel discussion titled “The Intersection of Cancer Genetics, Law and Advocacy.” The April 25 talk at the JCC Manhattan was hosted by the Basser Center for BRCA at the University of Pennsylvania, the law firm Kelley Drye and the organization Judges & Lawyers Breast Cancer Alert.

On the heels of that discussion, FORCE will look again at the issue during a session at its annual conference, set for June 8-10 in Orlando, Florida. During that session, titled “Hereditary Cancer, Insurance and Your Legal Rights,” patient advocate Brendan Bietry and Lara Cartwright-Smith, J.D., M.P.H., an associate research professor in the Department of Health Policy and Management at George Washington University, will discuss the laws that protect against discrimination; the regulations that affect health insurance coverage for preventive services, breast reconstruction and lymphedema; and how to initiate an appeal for insurance coverage.

The FORCE conference will also include sessions on prevention and treatment of breast, ovarian, pancreatic and other cancers; survivorship and previvorship issues; mastectomy and breast reconstruction; communicating about cancer risk with children and extended family members; exercise, diet and hereditary cancer; and using humor to cope.

Genetics on the Job

One concern is what legal protections exist for those who undergo genetic testing and discover that they carry a genetic mutation that predisposes them to one or more cancer types.

The good news is that the Genetic Information Nondiscrimination Act (GINA), passed in 2008, prevents health insurers and employers covered by the measure from using genetic data to exclude anyone, Prince pointed out. Not only does the law prohibit discrimination based on genetic information, test results, the use of genetic services or family history, but it states that employers and health insurers are not allowed to collect that data, she said.
Unfortunately, Schlager noted, there are “significant omissions” from that law: namely life, disability and long-term care insurance.

“We have individuals being denied life insurance,” she said. “You have to tell (if you’ve undergone testing and what your results were) or they’ll void the policy, and that’s a deterrent to some for genetic testing.” Some who know they want to be tested may pre-empt the problem by buying their life insurance first, Domchek suggested.

With the introduction of the Affordable Care Act (ACA) came some new gaps in protection, these related to the gathering and use of genetic information by employers, the panelists said.

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