Genetic Privacy and H.R. 1313

Judy Russell, The Legal Genealogist, just published an important blog post titled “A genetic privacy gamechanger?”.  It is about H.R. 1313, a bill moving through the U.S. House of Representatives. The bill, if passed into law, would threaten the protections guaranteed to genetic genealogists in the United States (and to anyone in that country who has taken a DNA test for any reason) by weakening the Genetic Information Non-Discrimination Act of 2008 (GINA for short).  Judy’s post is essential reading and can be found here. Another assessment of the bill is here.

If H.R. 1313 concerns you, you may be asking yourself “What can I do?

First, you can track the progress of this bill on Congress’ website. It was introduced in the House on 2 March by Rep. Virginia Foxx, a Republican who represents the 5th congressional district in North Carolina.  (Shorthand notation for that description is R-NC-5.) The bill was initially co-sponsored by Rep. Tim Walberg [R-MI-7] and later picked up two more co-sponsors: Rep. Elise Stefanik [R-NY-21] and Rep. Paul Mitchell [R-MI-10]. (EDIT:  Co-sponsor Luke Messer [R-IN-6] was added on 17 March and Thomas Garrett [R-VA-5] on 20 March.) H.R. 1313 was then referred to three different committees within that body of government:  the Committee on Education and the Workforce, the Committee on Energy and Commerce, and the powerful House Ways and Means Committee. As of the time I published this post, the congress.gov website did not yet note that the bill had been approved by the Committee on Education and the Workforce, but news sites are reporting that happened on 8 March. That means the best chances to stop the bill are in the Committee on Energy and Commerce and/or the Ways and Means Committee.

Second, and more importantly, you can let the sponsors of the bill and the members of the committees involved know that you oppose the bill by calling, writing (postcards are best), and faxing them. The more they hear from you, the better. I will provide contact information below as well as a sample script to use when you call.

But first, some guidance on who should call whom.  Any U.S. citizen who is concerned about H.R. 1313 can and should contact the committees themselves, especially the House Ways and Means Committee, which will be the final stop before the bill is voted on by the whole House of Representatives. If you happen to live in a district represented by Virginia Foxx, one of the co-sponsors of the bill, or a member of either committee still considering the bill, you should contact your representative and make sure they know you live in their district. Remember, their job is to represent your interests. Even of you think your representative agrees with you on this issue, contact them! Knowing their constituents oppose this bill gives them more “cover” to work against it.

 

Sample script to use for a phone call:

Hello, my name is [your name], and I live in [city, state]. Please tell Representative [XXX] that I oppose H.R. 1313 because I am concerned about genetic privacy. What is the Representative’s position on the bill?  I [would like/do not need] a written response to this call.

Yes, it’s really that simple!  If you ask for a written response, the staff member who answers the phone will ask for your email or mailing address.  Then, you’re done!

 

Sample text to use for a postcard or fax:

Dear Representative [XXX],
My name is [your name], and I live in [city, state].  I urge you to oppose H.R. 1313 because I am concerned about genetic privacy.
Sincerely,
[your name]

Keep written contact brief, and only mention this one issue in your postcard or fax.  If you have other concerns you’d like to address with your Congressperson, use another postcard or fax.

 

All concerned US citizens should contact:

House Ways and Means Committee
1102 Longworth HOB
Washington D.C. 20515
Phone (202) 225-3625
Fax: (202) 225-2610
Committee on Energy and Commerce
2125 Rayburn House Office Building
Washington, D.C. 20515
Phone (202) 225-2927

 

Concerned US citizens who are represented by the following people should contact:

Make sure they know you live (and vote) in their district. The list is organized by state then district, and the representatives’ involvement with the bill is indicated. If you are not sure who represents you, check here.  Follow the links for contact information.

Alabama:
Terri Sewell [D-AL-7] — Member, Ways & Means

Arizona:
David Schweikert [R-AZ-6] — Member, Ways & Means

California:
Mike Thompson [D-CA-5] — Member, Ways & Means
Doris Matsui [D-CA-6] — Member, Energy & Commerce
Jerry McNerney [D-CA-9] — Member, Energy & Commerce
Anna Eshoo [D-CA-18] — Member, Energy & Commerce
Devin Nunes [R-CA-22] — Member, Ways & Means
Judy Chu [D-CA-27] — Member, Ways & Means
Tony Cárdenas [D-CA-29] — Member, Energy & Commerce
Raul Ruiz [D-CA-36] — Member, Energy & Commerce
Linda Sanchez [D-CA-38] — Member, Ways & Means
Mimi Walters [R-CA-45] — Member, Energy & Commerce
Scott Peters [D-CA-52] — Member, Energy & Commerce

Colorado:
Diana DeGette [D-CO-1] — Member, Energy & Commerce

Connecticut:
John Larson [D-CT-1] — Member, Ways & Means

Florida:
Gus Bilirakis [R-FL-12] — Member, Energy & Commerce
Kathy Castor [D-FL-14] — Member, Energy & Commerce
Vern Buchanan [R-FL-16] — Member, Ways & Means
Carlos Curbelo [R-FL-26] — Member, Ways & Means

Georgia:
Buddy Carter [R-GA-1] — Member, Energy & Commerce
John Lewis [D-GA-5] — Member, Ways & Means

Illinois:
Bobby Rush [D-IL-1] — Member, Energy & Commerce
Peter Roskam [R-IL-6] — Member, Ways & Means
Danny Davis [D-IL-7] — Member, Ways & Means
Janice Schakowsky [D-IL-9] — Member, Energy & Commerce
John Shimkus [R-IL-15] — Member, Energy & Commerce

Indiana:
Jackie Walorski [R-IN-2] — Member, Ways & Means
Susan Brooks [R-IN-5] — Member, Energy & Commerce
Luke Messer (R-IN-6] — BILL CO-SPONSOR
Larry Bucshon [R-IN-8] — Member, Energy & Commerce
Adam Kinzinger [R-IL-16] — Member, Energy & Commerce

Iowa:
David Loebsack [D-IA-2] — Member, Energy & Commerce

Kansas:
Lynn Jenkins [R-KS-2] — Member, Ways & Means

Kentucky:
Brett Guthrie [R-KY-2] — Member, Energy & Commerce

Louisiana:
Steve Scalise [R-LA-1] — Member, Energy & Commerce

Maryland:
John Sarbanes [D-MD-3] — Member, Energy & Commerce

Massachusetts:
Richard Neal [D-MA-1] — Member, Ways & Means
Joe Kennedy III [D-MA-4] — Member, Energy & Commerce

Michigan:
Fred Upton [R-MI-6] — Member, Energy & Commerce
Tim Walberg [R-MI-7] — BILL CO-SPONSOR; Member, Energy & Commerce
Mike Bishop [R-MI-8] — Member, Ways & Means
Sandy Levin [D-MI-9] — Member, Ways & Means
Paul Mitchell [R-MI-10]—BILL CO-SPONSOR
Debbie Dingell [D-MI-12] — Member, Energy & Commerce

Minnesota:
Erik Paulsen [R-MN] — Member, Ways & Means

Mississippi:
Gregg Harper [R-MS-3] — Member, Energy & Commerce

Missouri:
Billy Long [R-MO-7] — Member, Energy & Commerce
Jason Smith [R-MO-8] — Member, Ways & Means

Nebraska:
Adrian Smith [R-NE-3] — Member, Ways & Means

New Jersey:
Frank Pallone [D-NJ-6] — Ranking Member, Energy & Commerce
Leonard Lance [R-NJ-7] — Member, Energy & Commerce
Bill Pascrell [D-NJ-9] — Member, Ways & Means

New Mexico:
Ben Lujan [D-NM-3] — Member, Energy & Commerce

New York:
Yvette Clarke [D-NY-9] — Member, Energy & Commerce
Joseph Crowley [D-NY-14] — Member, Ways & Means
Eliot Engel [D-NY-16] — Member, Energy & Commerce
Paul Tonko [D-NY-20] — Member, Energy & Commerce
Elise M. Stefanik [R-NY-21]—BILL CO-SPONSOR
Tom Reed [R-NY-23] — Member, Ways & Means
Brian Higgins [D-NY-26] — Member, Ways & Means
Chris Collins [R-NY-27] — Member, Energy & Commerce

North Carolina:
G.K. Butterfield [D-NC-1] — Member, Energy & Commerce
George Holding [R-NC-2] — Member, Ways & Means
Virginia Foxx [R-NC-5] —BILL SPONSOR
Richard Hudson [R-NC-8] — Member, Energy & Commerce

North Dakota:
Kevin Cramer [R-ND] — Member, Energy & Commerce

Ohio:
Robert Latta [R-OH-5] — Member, Energy & Commerce
Bill Johnson [R-OH-6] — Member, Energy & Commerce
Pat Tiberi [R-OH-12] — Member, Ways & Means
Jim Renacci [R-OH-16] — Member, Ways & Means

Oklahoma:
Markwayne Mullin [R-OK-2] — Member, Energy & Commerce

Oregon:
Greg Walden [R-OR-2] — Chair, Energy & Commerce
Earl Blumenauer [D-OR-3] — Member, Ways & Means
Kurt Schrader [D-OR-5] — Member, Energy & Commerce

Pennsylvania:
Mike Kelly [R-PA-3] — Member, Ways & Means
Ryan Costello [R-PA-6] — Member, Energy & Commerce
Pat Meehan [R-PA-7] — Member, Ways & Means
Michael Doyle [D-PA-14] — Member, Energy & Commerce
Tim Murphy [R-PA-18] — Member, Energy & Commerce

South Carolina:
Tom Rice [R-SC-7] — Member, Ways & Means

South Dakota:
Kristi Noem [R-SD] — Member, Ways & Means

Tennessee:
Diane Black [R-TN-6] — Member, Ways & Means
Marsha Blackburn [R-TN-7] — Member, Energy & Commerce

Texas:
Sam Johnson [R-TX-3] — Member, Ways & Means
Joe Barton [R-TX-6] — Vice Chair, Energy & Commerce
Kevin Brady [R-TX-8] —CHAIR, WAYS & MEANS
Bill Flores [R-TX-17] — Member, Energy & Commerce
Pete Olson [R-TX-22] — Member, Energy & Commerce
Kenny Marchant [R-TX-24] — Member, Ways & Means
Michael Burgess [R-TX-26] — Member, Energy & Commerce
Gene Green [D-TX-29] — Member, Energy & Commerce
Lloyd Doggett [D-TX-35] — Member, Ways & Means

Vermont:
Peter Welch [D-VT] — Member, Energy & Commerce

Virginia:

Thomas Garrett [R-VA-5] — BILL CO-SPONSOR
Morgan Griffith [R-VA-9] — Member, Energy & Commerce

Washington:
Suzan DelBene [D-WA-1] — Member, Ways & Means
Cathy McMorris Rodgers [R-WA-5] — Member, Energy & Commerce
Dave Reichert [R-WA-8] — Member, Ways & Means

West Virginia:
David McKinley
[R-WV-1] — Member, Energy & Commerce

Wisconsin:
Ron Kind [D-WI-3] — Member, Ways & Means

 

7 thoughts on “Genetic Privacy and H.R. 1313”

  1. And this bill was created for what reason?
    Our dNA is our own PRIVATE information. It is NOT to be subject to any less than any other law provided about search and seizure.

    We voluntarily gave up our dNA for testing to a lab. For the ONLY PURPOSE
    of helping each other FIND FAMILY. Genealogical purposes ONLY.

    Not to be subverted by law makes or other agencies in a very sneaky way.

    that is what this is.

    NO ON THIS BILL.

    1. Agreed! Although I don’t think the target of this bill is genealogy testing (rather, genetic testing specifically for medical purposes), it will have a chilling effect on genetic genealogy. We need to be able to trust that the only people who can see our results are people we choose.

  2. To David Schweikert [R-AZ-6] — Member, Ways & Means –
    Why on earth are you sponsoring a bill that totally violates our personal genetic privacy and HIPAA?
    I’m in District 8 represented by Trent Franks, but I’m speaking as an Arizonan.
    I am totally opposed to H.R. 1313.

Leave a Reply

Your email address will not be published. Required fields are marked *