Genetic Privacy

Time magazine includes an essay in response to sending GINA (Genetic Information Nondiscrimination Bill) on to the President for his signature.

Sidenote: why hasn't he signed it yet? Perhaps he's setting up a good photo op akin to the carrier picture.

Anyway, Michael Kingsley thinks that discrimination on the basis of genetic information is no different from any other type of actuarial discrimination followed by the insurance companies. After all, they reject customers with other problems (diabetes, cancer, etc.), why not genetic information?

Just returned from a conference in Cleveland, Ohio, dealing with the many different aspects and potential effects of sequencing the human genome. I'll write in the next couple of days about items that particularly interested me.

But first, what is genomics?

I hate to admit it, but when I first joined a group at the Utah Department of Health to discuss genomics, I had no idea what it was. Surprising to me was the fact that others gave me quick definitions, but they varied considerably. So, here's some of the ones you might consider:

Wikipedia: Genomics is the study of an organism's entire genome. The field includes intensive efforts to determine the entire DNA sequence of organisms and fine-scale genetic mapping efforts. The field also includes studies of intragenomic phenomena such as heterosis, epistasis, pleiotropy and other interactions between loci and alleles within the genome. In contrast, the investigation of single genes, their functions and roles, something very common in today's medical and biological research, and a primary focus of molecular biology, does not fall into the definition of genomics, unless the aim of this genetic, pathway, and functional information analysis is to elucidate its effect on, place in, and response to the entire genome's networks.

Rushing to leave the house yesterday for an update on public responses to the biobank project being considered by the NIH, I had to leave the final voting to be captured on my DVR. Even at that time, it was obvious that the Senate was going to overwhelmingly approve passage of the Genetic Information Nondiscrimination Act.

It was interesting after that to hear comments:

"We helped get that done," from Kathy Hudson, head of the Genetics Public Policy Center.

"Thank you, everyone, for your tremendous efforts," from Sharon Terry, head of the Genetic Alliance.

My e-mail has been buzzing all day with messages about efforts to get the Genetic Information Discrimination Act to the floor of the Senate. Word is this will happen tomorrow. If you haven't expressed your opinion yet through your Senators, please call or e-mail them ASAP. You can find them quickly by typing "state name" plus Senators into your favorite search engine. That will get you their preferred e-mail form and their contact phone number.

According to an article that appeared today in The New York Times,

The Center for American Progress has an excellent (long) article on genetic nondiscrimination, wih the title, Genetic Non-Discrimination, Policy Considerations in the Age of Genetic Medicine. The artcile represents a summary of a full report, also available on the website.

After a brief introduction to genomes and genetic testing, they state:

For individual Americans, this growth of genomic data means more accurate personal genetic information will become available to them, their physicians and, yes, their insurance companies, to make perhaps monumental health care decisions. This new information could well be a blessing or a curse, depending on how it is handled by patients, their doctors and their insurers. That’s why legislation based on the best bioethical principles needs to be enacted by Congress this year.

After considerable efforts from hundreds of organizations trying to protect your genetic privacy, it's time for you to act.

GINA, the Genetic Information Nondiscrimination Act, is finally supposed to be debated on the Senate floor this week, perhaps on Monday the 21st (April). Here's how you can help:

1. To find out whether one or both of your senators is a cosponsor, check at
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN00358:@@@P

2. If your senator is a cosponsor, call and thank your senator for supporting this bill. Phone numbers are easy to find at http://geneticalliance.org/senator.list

A close friend of mine asked me some time ago what company she should order a confidential paternity test from. I told her I wouldn't dig deep into individual companies until she was able to tell me she knew what she would do with the results. I haven't heard from her lately on this subject, so she either went ahead and did something on her own or gave up the idea for now.

In the past week or two, a couple of people submitting comments to geneforum have asked for the name of a paternity testing company.

The final issues discussed in the article, Research ethics and the challenge of whole-genome sequencing focus on the fact that researchers, biobanks, companies that may fold tomorrow hold your DNA once you submit it for analysis. In signing an informed consent for your DNA to be sequenced, and maybe even for the information to be published publicly, you are giving up your autonomy. You--in the form of the genetic material that makes you who you are--now is available to others.

This is part 2 of the discussion of the issues raised in the Nature Reviews Genetics article, Research ethics and the challenge of whole-genome sequencing. The article itself is available only to those with library access or a journal subscription. As in earlier entries, quotations and indentations identify text taken directly from the article.

I wonder. . . did James Watson or Craig Venter ask their relatives whether they agreed to them having their whole genome sequence posted for the public to see? What about the 9 volunteers for the next public batch of genome sequencing?

Because our organization is currently operating on no outside fundiing, we've chosen to keep our website simple. One loss, as far as I'm concerned, is the inability to search for specific blog entries using key words. I'm sorry that is the case. A search engine that is not flexible enough to find what you are looking for is worse, we believe, than nothing.

So, here's what you do if you are interested in a particular topic: click on the linkis at the left, by subject. There was only one entry in bioweapons--the blogger quit almost immediately, so that's not on the list. However, the other general topics are. They look really weird, you say. That's true, but for some programming reason I do not understand, such topic lists look weird on a number of sites--including those written by professionals who really know their html, etc.