Genes, Jews, Ethical Moves: Obama’s Got A Lot To Do
Host Intro: At this year’s State of the Union address, President Obama asked Congress to put $215 million dollars towards a health care initiative that would use genetics to personalize medical treatment. And the way to do this, he said, is to build a giant database of people’s genomes that we can study. Obama proposes using one million volunteer’s for this.
Obama: So the precision medicine initiative we’re launching today will lay the foundation for a new generation of life saving discoveries
But these discoveries might take some time. Arianna Skibell takes us deep into our genome jumble.
Our genomes are complicated. But genetic testing is helping us make sense of it all.
Caplan: for a long time we knew that we had hereditary materials, but all we could see where the chromosomes.
Arthur Caplan is the head of medical ethics at NYU.
Caplan: That would be like seeing an encyclopedia and being able to see the volumes of the encyclopedia.
Being able to see these volumes, or chromosomes, doesn’t tell us enough to create the individualized care that Obama wants to see. But now that we can sequence genes, things are starting to change.
Caplan: Sequencing your genes is opening up one of the volumes and being able to see the sentences.
Seeing these sentences of genetic material, Caplan says, is just the beginning.
Caplan: Just getting the genetic message doesn’t mean you’re going to understand how to safely intervene to fix something or prevent something. It’s certainly the start of a road. But it’s a road, and it’s a pretty long road.
The road is long because there’s so much genetic material to interpret in the general population. And until we develop a dictionary to understand that material, we won’t be able to create targeted cures for diseases. But it’s actually possible to know a lot more about the genetics of more insular communities. In fact, the Ashkenazi Jewish genome is already completely mapped. But having such a small genetic community makes members more likely to pass on certain diseases. Chani Weisman, a genetic counselor, took precautions before starting her family.
Chani: I did carrier screening before I even met my husband. Because I was already a genetic counselor and I said, op, I should do carrier-screening cause I’ll need it at some point.
Ashkenazi Jews are more likely than the general population to be carriers of certain genetic diseases. For example, one in about 30 Ashkenazi Jews carry the Tay-Sachs gene. Children with Tay-Sachs have a whole host of physical and mental issues and tend to not live past five years old.
Genetic testing has become a pretty standard practice. In Atlanta, a Jewish group ChaiTunes urged folks to get tested with a song.
Song: Give JScreen a try. I was born an Ashkenazi Jew. My new wife is a Persian Jew. Genetic testing, it’s great for family planning. It’s time for us to give JScreen a try.
Of course, genetic testing isn’t just for family planning; it can also be used to prevent disease. About two years ago, Angelina Jolie discovered she had a faulty gene associated with breast cancer. This gene is called BRCA. As a result, she had a preemptive double mastectomy. In the weeks following Jolie’s announcement, women of all ethnicities flocked to genetic counselors to get tested.
After this, the Program for Jewish Genetic Health at Albert Einstein College started providing subsidized BRCA testing for Ashkenazi Jews, who have a one in 40 chance of being carriers. Traditionally, only women with a history of breast cancer would request testing. Nicole Schreiber-Agus, the Director of the Jewish Genetic Health program, said after Jolie this pattern changed.
Nicole: But we’re also getting people who are just coming in because they know they are Ashkenazi Jewish, they know there’s this one in 40 carrier rate and they just want to know.
And today, people can afford this knowledge. A decade ago it cost about $1 billion dollars to sequence a genome. Today it costs closer to $5,000 and the price continues to drop. To test one gene can be as cheap as $100. But, Caplan, the bioethicists, says that as genetic testing becomes more common, ethics become a necessary conversation.
Caplan: There are just billions of ethical issues that come out of this genetic revolution.
So we just looked at a few key ones, like insurance.
Caplan: Health insurance, life insurance. These are keyed up to risks. The more we find out about our genetic make-up, the more hard it could be for some people to get life insurance or disability insurance.
And while it’s great to find out things about your own genome, what if you don’t want other people to know?
Caplan: Are people going to say, hey, you know, before we go on a date, or before we sign a marriage license, how about we all go out and get genetically tested before I find out if I want to breed with you.
While genetic testing is not on most couples’ wedding to-do-list today, perhaps soon it’ll be right up there with the invitations, floral arrangements and seating charts.
Arianna Skibell, Columbia Radio News