GINA: A Primer
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.â€). 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
- 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
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
- 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 25th.
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 26th 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).
November 28th, 2007 at 1:27 am
how a right wing senator is stalling a law that will prohibit discrimination based on genetics. In case if anyone is interested in knowing more about GINA (Genetic Information Non-Discrimination Act), please read thisFAQ. It is a very good post with important information. Take your time to read the post if you are worried about the consequences due to proliferation of cheap genetic tests. I would also like you to think about what I would like to call as
May 5th, 2007 at 7:31 pm
m amazed when scientists, physicians present an important issue to the public in a readable and totally understandable style. The genetic genealogist did exactly that by answering some so called “frequently asked questions†aboutGINA, the Genetic Information Non-Discrimination Actthat has recently passed the House of Representatives. MC at Neurophilosophy introduces a program called Gene2Music which can transcribe any DNA sequence into music. We should make a podcast of the musics generated by all the genes
November 28th, 2007 at 1:27 am
how a right wing senator is stalling a law that will prohibit discrimination based on genetics. In case if anyone is interested in knowing more about GINA (Genetic Information Non-Discrimination Act), please read thisFAQ. It is a very good post with important information. Take your time to read the post if you are worried about the consequences due to proliferation of cheap genetic tests. I would also like you to think about what I would like to call as
April 24th, 2008 at 5:39 pm
GINA.
May 28th, 2008 at 4:16 am
2008, President George W. Bush signed the Genetic Information Nondiscrimination Act of 2008 (GINA) protecting people from discrimination based on genetic material. GINA becomes effective November 21, 2009. A general “primer” on GINA is covered at theGenetic Genealogist.All and all, May has been a discriminating month…
May 6th, 2007 at 1:44 am
[...] did exactly that by answering some so called “frequently asked questions” about GINA, the Genetic Information Non-Discrimination Act that has recently passed the House of [...]
May 6th, 2007 at 1:50 am
[...] did exactly that by answering some so called “frequently asked questions” about GINA, the Genetic Information Non-Discrimination Act that has recently passed the House of [...]
May 14th, 2007 at 3:08 pm
[...] want to repeat what’s been said elsewhere, so I’ll link to the good and thorough GINA Primer over at The Genetic [...]
May 29th, 2007 at 10:28 am
[...] did exactly that by answering some so called “frequently asked questions” about GINA, the Genetic Information Non-Discrimination Act that has recently passed the House of [...]
July 17th, 2007 at 8:32 am
[...] by: Blaine at July 17, 2007 07:23 [...]
July 19th, 2007 at 5:06 am
[...] wrote about GINA, the Genetic Information Nondiscrimination Act, back in April, but I haven’t updated the bill’s progress through the legislature. Epidemix [...]
September 7th, 2007 at 5:26 pm
[...] If you have been asleep at the wheel, HR 493 passed the house 420-3. … [May 16, 2007 10:10 PM] The Genetic Genealogist — Adding DNA to the Genealogist’s Toolbox: …common great-great-grandparent. (For a chart explaining degrees of cousins, see the Table of [...]
November 19th, 2007 at 2:22 pm
[...] employers from using or collecting genetic information to make employment decisions. I wrote a GINA Primer in April, if you’re interested in learning more about the Act (here’s the full text of [...]
November 23rd, 2007 at 1:23 am
[...] in knowing more about GINA (Genetic Information Non-Discrimination Act), please read this FAQ. It is a very good post with important information. Take your time to read the post if you are [...]
December 6th, 2007 at 1:26 pm
[...] that the federal government will soon pass the Genetic Information Nondiscrimination Act (See “GINA, A Primer“) to create an extensive nationwide prohibition of discrimination on the basis of genetic [...]
February 22nd, 2008 at 11:36 pm
[...] (ISOGG) is sponsoring the Save GINA contest. I’ve written about GINA before (see “GINA: A Primer“), which is legislation currently before the Senate the seeks to protect people from [...]
April 24th, 2008 at 3:01 am
[...] April 27, 2007, I wrote “GINA: A Primer“, which was an introduction to the Genetic Nondiscrimination Act. Today, nearly a year later, [...]
September 19th, 2008 at 2:56 am
[...] diagnosed, regulation seems to be a step in the right direction. The genetic discrimination act is also discussed. Other interesting articles include one on the findings from a Finnish study of genealogy, a [...]
December 11th, 2008 at 8:06 pm
[...] want to repeat what’s been said elsewhere, so I’ll link to the good and thorough GINA Primer over at The Genetic [...]
May 9th, 2009 at 11:56 pm
The idea of discrimnation based on genetics is not new, but thankfully someone has impsed a law to alleviate the likelihood of discrimination. Im glad GINA act will soon be in effect.
July 27th, 2009 at 7:40 am
Now that the President has signed GINA, federal agencies must write the implementing regulations that will provide detailed guidance for health insurers and employers about how to comply with the new law.
Free Reminder’s last blog post..We Belong Pat Benatar
October 14th, 2009 at 4:36 pm
This is the ultimate invasion of privacy. Your DNA should stay just that, YOURS!
December 9th, 2009 at 2:11 am
Thanks for opening my eyes to this. Really great article you put together.
Employment Lawyer’s last blog post..Employment Laws ? There to Protect You