Preserve our Genetic Privacy, not Workplace Wellness Programs

In addition to their new Republicare plan, Republicans are advancing a bill they’re calling “Preserving Employee Wellness Programs Act” which would specifically make it possible for employers to demand that employees undergo genetic testing and report the results to their employer’s workplace wellness program. Employees who refuse testing could face up to a 30% increase in their health insurance costs.

I’m a graduate student in biology, so I want to share my professional view on genetic testing, as well as my less-professional summary of the context for this new bill, and advice on what we can do about it.

Genetic Testing

Genetic testing can give you information about your predisposition for a variety of disorders, including cancers and other adult-onset disorders such as Huntington’s, Parkinson’s, or Alzheimer’s, and can also give you information about your likelihood of passing on risk factors to your children.

Whether to get genetic testing for any particular gene or disease is a deeply personal and complex decision. For instance, if one of your parents had Huntington’s Disease, you have a 50% chance of inheriting it, but symptoms usually don’t appear until after age 30. A genetic test for the Huntington’s disease gene, HD, will tell you definitively whether you will develop the disease, but there is no prevention or cure for the disease, which causes involuntary movements, emotional disturbance, and eventually death. Whether it is better to know or not know is a difficult, personal question. And you are not the only one affected- if you learn that you carry the gene, that means your siblings and children also have a 50% chance of carrying it.

In a very different case, mutations in the BRCA1 and BRCA2 genes are associated with breast cancer. However, unlike for Huntington’s, having a BRCA mutation does not guarantee that you will get breast cancer, it only means your chances are higher than the general population’s. But, there are ways to mitigate the risk of breast cancer, by increased screening or, more drastically, by mastectomy. Would you want to know about your mutation status, even if it meant considering a drastic surgery? This decision is complicated by the fact that, even if you don’t have a BRCA mutation, you can still get breast cancer, so a negative test doesn’t guarantee anything, either. Like with Huntington’s, if you learn you do carry a BRCA mutation, that means your siblings and children also have a 50% chance of carrying it.

HD and BRCA1/2 are some of our best understood disease causing genes. Many others genes have been shown to be associated with diseases such as Alzheimer’s or schizophrenia, but the strength of that association is not well understood. You can get tested for those too, but it’s difficult even for a doctor to interpret the results.

Republicans would like to allow employers to intrude on these already difficult and complex personal decisions, by charging you thousands of dollars per year extra for your health insurance if you refuse to undergo testing.

H.R.1313

Here’s the recent historical context of the bill- which I found confusing in most of the news articles I’ve seen about it. In fact, H.R.1313 only strengthens a provision of Obamacare. In 1990, the Americans with Disabilities Act (ADA) declared it illegal to discriminate in hiring, promoting, or firing employees based on disability. In 2008, the Genetic Information Nondiscrimination Act (GINA) extended these protections to prevent similar discrimination based on the knowledge that an employee may have a genetic predisposition to a disease or disorder. Under these bills, employers may not require employees to provide information related to disabilities or genetic predisposition.

Then, in 2014, Obamacare allowed employers to offer Workplace Wellness Programs. In exchange for discounted health insurance, the programs often ask employees to get health screenings, provide information about their diet and activity, and can include asking smokers to join smoking-cessation programs or asking overweight employees to join weight loss programs. The information gathered by these programs is supposed to be transmitted to employers only in aggregate. Since the ADA says employees can’t demand certain types of health information, these programs must be voluntary. The Equal Employment Opportunity Commission (EEOC)decided that a program is still voluntary when employers charge up to 30% more for employees who choose not to participate. This is a large sum of money, thousands of dollars per year. The idea was that if workers joined these programs they would be healthier and would require less medical care, driving down insurance costs for everyone. However, studies have shown the programs to have limited effect- for instance, a Department of Labor study found that participants in workplace weight loss programs lost an average of one pound per year, and they saw no significant change in medical costs.

These programs do come with risks, as the data collected on employees is kept by either the employer or by third-party groups that run the wellness programs. Harvard Business Review reported that these third-parties are worth $6 billion in the US, and these for-profit companies sell employee data, since it is not protected by HIPAA. Health databases are also vulnerable to hacks.

It is disputed whether Obamacare’s provision for workplace wellness programs allows employers to require genetic testing as part of the program, or whether GINA still makes that illegal. Additionally, the Harvard Review emphasizes that workplace wellness programs are “largely unregulated” and that employers should consider “voluntary ethical frameworks” to make sure that health data collected there does not affect employment decisions. The EEOC thinks some companies failed to abide by these ethical frameworks, and has taken three employers to court over their wellness programs.

The new bill would clarify that, under Republicare or Obamacare, wellness programs DO NOT violate ADA or GINA. This would definitively allow employers to ask for genetic testing, and would decrease the EEOC’s ability to pursue legal action against employers who they believe use information gathered through wellness programs to discriminate. You can read the text of the bill here: The bill also states: “the collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information.” In other words, a company could demand that you get tested for BRCA1/2 mutations, AND they could ask you whether your mother had breast cancer.

A proponent of the bill, Kathryn Wilber of the American Benefits Council, which represents employer interests, said that “companies remain committed to protecting the privacy of this information and that employers take this responsibility ‘very, very seriously.’” I do not trust employers to keep my genetic information private, either from hackers or from managers making employment decisions. Even when information is provided in aggregate, it is not difficult to identify an individual based on their health information, especially at small companies.

According to CNBC, a spokeswoman for the House Committee on Education and the Workforce, which recently approved the bill, said the bill gives “employees the choice to participate in a voluntary program” and that “we believe families should be empowered with that choice.” This language is disingenuous- families and individuals already have the choice to get genetic testing, and right now they can make that choice without worrying about large increases in their insurance costs.

Fighting Back

In the House Committee for Education and the Workforce the bill was approved along party lines, 22 Republicans voting for it and 17 Democrats against it. Now, the bill is in the House Committees for Ways and Means and for Energy and Commerce. It will be debated there before moving on to the full house. Here are the representatives on those committees and their contact information. Call especially the Republicans, and especially the chairmen:

Ways and Means Committee Members:

Republicans:

Kevin Brady (TX)- Chairman- (202) 225–4901

Sam Johnson (TX) 202–225–4201

Devin Nunes (CA) 202–225–2523

Pat Tiberi (OH) 202–225–5355

Dave Reichert (WA) 202–225–7761

Peter Roskam (IL) 202–225–4561

Vern Buchanan (FL) 202–225–5015

Adrian Smith (NE) 202–225–6435

Lynn Jenkins (KS) 202–225–6601

Erik Paulsen (MN) 202–225–2871

Kenny Marchant (TX) 202–225–6605

Diane Black (TN) 202–225–4231

Tom Reed (NY) 202–225–3161

Mike Kelly (PA) 202–225–5406

Jim Renacci (OH) 202–225–3876

Pat Meehan (PA) 202–225–2011

Kristi Noem (SD) 202–225–2801

George Holding (NC) 202–225–3032

Jason Smith (MO) 202–225–4404

Tom Rice (SC) 202–225–9895

David Schweikert (AZ) 202–225–2190

Jackie Walorski (IN) 202–225–3915

Carlos Curbelo (FL) 202–225–2778

Mike Bishop (MI) 202–225–4872

Democrats:

Richard Neal (MA)- (202) 225–5601

Sander Levin (MI) 202–225–4961

John Lewis (GA) 202–225–3801

Lloyd Doggett (TX) 202–225–4865

Mike Thompson (CA) 202–225–3311

John Larson (CT) 202–225–2265

Earl Blumenauer (OR) 202–225–4811

Ron Kind (WI) 202–225–5506

Bill Pascrell (NJ) 202–225–5751

Joseph Crowley (NY) 202–225–3965

Danny Davis (IL) 202–225–5006

Linda Sanchez (CA) 202–225–6676

Brian Higgins (NY) 202–225–3306

Terri Sewell (AL) 202–225–2665

Suzan DelBene (WA) 202–225–6311

Judy Chu (CA) 202–225–5464

Energy and Commerce

Walden, Greg Chairman

Oregon 2nd District

202–225–6730

Barton, Joe Vice Chairman

Texas 6th District

202–225–2002

Bilirakis, Gus M.

Florida 12th District

202–225–5755

Blackburn, Marsha

Tennessee 7th District

202–225–2811

Brooks, Susan W.

Indiana 5th District

202–225–2276

Bucshon, Larry

Indiana 8th District

202–225–4636

Burgess, Michael

Texas 26th District

202–225–7772

Carter, Buddy

Georgia 1st District

202–225–5831

Collins, Chris

New York 27th District

202–225–5265

Costello, Ryan

Pennsylvania 6th District

202–225–4315

Cramer, Kevin

North Dakota At-Large

202–225–2611

Flores, Bill

Texas 17th District

202–225–6105

Griffith, Morgan

Virginia 9th District

202–225–3861

Guthrie, S. Brett

Kentucky 2nd District

202–225–3501

Harper, Gregg

Mississippi 3rd District

202–225–5031

Hudson, Richard

North Carolina 8th District

202–225–3715

Johnson, Bill

Ohio 6th District

202–225–5705

Kinzinger, Adam

Illinois 16th District

202–225–3635

Lance, Leonard

New Jersey 7th District

202–225–5361

Latta, Robert E.

Ohio 5th District

202–225–6405

Long, Billy

Missouri 7th District

202–225–6536

McKinley, David

West Virginia 1st District

202–225–4172

McMorris Rodgers, Cathy

Washington 5th District

202–225–2006

Mullin, Markwayne

Oklahoma 2nd District

202–225–2701

Murphy, Tim

Pennsylvania 18th District

202–225–2301

Olson, Pete

Texas 22nd District

202–225–5951

Scalise, Steve

Louisiana 1st District

202–225–3015

Shimkus, John

Illinois 15th District

202–225–5271

Upton, Fred

Michigan 6th District

202–225–3761

Walberg, Tim

Michigan 7th District

202–225–6276

Walters, Mimi

California 45th District

202–225–5611

Butterfield, G.K.

North Carolina 1st District

202–225–3101

Cárdenas, Tony

California 29th District

202–225–6131

Castor, Kathy

Florida 14th District

202–225–3376

Clarke, Yvette D.

New York 9th District

202–225–6231

DeGette, Diana

Colorado 1st District

202–225–4431

Dingell, Debbie

Michigan 12th District

202–225–4071

Doyle, Mike

Pennsylvania 14th District

202–225–2135

Engel, Eliot

New York 16th District

202–225–2464

Eshoo, Anna G.

California 18th District

202–225–8104

Green, Gene

Texas 29th District

202–225–1688

Kennedy III, Joseph P.

Massachusetts 4th District

202–225–5931

Loebsack, David

Iowa 2nd District

202–225–6576

Lujan, Ben R.

New Mexico 3rd District

202–225–6190

Matsui, Doris O.

California 6th District

202–225–7163

McNerney, Jerry

California 9th District

202–225–1947

Pallone Jr., Frank

New Jersey 6th District

202–225–4671

Peters, Scott

California 52nd District

202–225–0508

Ruiz, Raul

California 36th District

202–225–5330

Rush, Bobby L.

Illinois 1st District

202–225–4372

Sarbanes, John P.

Maryland 3rd District

202–225–4016

Schakowsky, Jan

Illinois 9th District

202–225–2111

Schrader, Kurt

Oregon 5th District

202–225–5711

Tonko, Paul D.

New York 20th District

202–225–5076

Welch, Peter

Vermont At-Large

202–225–4115