The Genetic Genealogist

1. Who is GINA?
GINA isn’t a ‘who’, it’s a ‘what’. GINA stands for Genetic Information Non-Discrimination Act.

2. Okay, what is the Genetic Information Non-Discrimination Act?
GINA aims to protect individuals in a variety of different areas. The legislation would prohibit access to genetic information by insurance companies and would prohibit insurance companies from discriminating against an applicant based on genetic information, the refusal to submit genetic information, or for have been genetically tested in the past. Additionally, the Act would prohibit employers from using or collecting genetic information to make employment decisions. The Act also establishes a Genetic Nondiscrimination Study Commission that is charged with reviewing new developments in the field of genetics and advising Congress.

To learn more about GINA and to follow GINA as it progresses through the Senate and ultimately to the President’s desk for his signature, check out the GINA page on Congresspedia. I had never heard of Congresspedia, but it is a great resource for following and learning about pending legislation in Congress.

3. What does GINA consider to be “genetic information”?
Interestingly, GINA considers the term “genetic information” to include an individual’s genetic tests, AND a family member’s genetic tests! (Note that GINA defines a “genetic test” as “an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detect genotypes, mutations, or chromosomal changes.”). Family members include dependents, and relatives out to the first-, second-, third-, and fourth-degree!!
Thus, your employer could not test any relative out to and including your third cousin. Third cousins share a common great-great-grandparent. (For a chart explaining degrees of cousins, see the Table of Consanguinity at Wikipedia.)

4. Where can I read the text of GINA (if I were so inclined)?
The full text of the current version of the bill is available at GovTrack.us.

5. Do we really need a federal act to protect against genetic discrimination?
In a press release announcing the introduction of GINA in the House of Representatives, sponsor Representative Louise M. Slaughter (D-NY) listed a number of reasons that GINA was necessary, including:

- In the 1970’s African Americans were denied jobs and insurance based on their carrier status for sickle cell anemia;

- In 1998 Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent.

- In 2000 the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.

In my opinion, Rep. Slaughter made one of the most convincing arguments in support of an act to prohibit discrimination based on genetic information:

“There are currently over 15,500 recognized genetic disorders affecting 13 million Americans, and every one of us is estimated to be genetically predisposed to between 5 and 50 serious disorders.” Testimony before the House Committee on Education and Labor on January 30, 2007 (available here).

6. You mean my genetic information isn’t already protected?
Maybe, but possibly not. 34 states have passed legislation to protect genetic information, beginning with Wisconsin in 1991. New York, for example, has fairly comprehensive legislation which forbids an employer from requesting, requiring, or performing genetic testing and prohibits an employer from making employment decisions based on genetic information. A complete table of state-by-state legislation is available at the National Conference of State Legislatures.

7. Who supports a genetic non-discrimination act?

- The general public: In 2004, 92% of people surveyed by the Genetics and Public Policy Center at Johns Hopkins University did not want employers to have access to their genetic information. A total of 80% thought that health insurers should not have access to their genetic information.

- Healthcare professionals: A recent survey of genetic counselors found that 68% would not seek insurance coverage for a genetic test because of the fear of discrimination. 25% said that they would use an alias to obtain a genetic test to reduce the risk of discrimination.

- Legislators: The Senate has previously and unanimously passed a similar bill, and the President has indicated that he supports the legislation to prevent genetic discrimination.

8. Why are we talking about GINA now?
On April 25, 2007, GINA passed the House of Representatives with a vote of 420 in favor to 3 opposed. You can see more about the results of the voting at the Washington Post Votes Database. Additionally, “The Personal Genome” has a youtube video of Representative Slaughter testifying before the House on the day the bill was passed.

9. Who voted against GINA?
There were 9 Representatives who did not register a vote, and there were 3 Nay votes. The Nay votes were cast by Representatives Jeff Flake (R-AZ), Ed Royce (R-CA), and Ron Paul (R-TX). I was unable to find a press release for any of the three Representatives stating why they might have opposed the bill.

10. Can I read a full report of the congressional proceedings when GINA was passed?
You betcha! “The Personal Genome” has been so kind as to provide a pdf of the full proceedings(pdf) from the Congressional Record on April 25^th.

11. So what happens to GINA now?
Now that GINA has passed the House of Representatives, the bill progresses to the Senate for consideration (Do you remember the entire process from the Schoolhouse Rock “I’m Just a Bill”?). On April 26^th the bill was received in the Senate and read for the first time. It normally takes time for a bill to proceed from a first reading to a vote – GINA was introduced in the House in January, for example.

12. Can I read more about GINA in the press?
There is more information about GINA at Wired, Wired Science, The Gavel, Daily Kos, and the Genetic Alliance (pdf).