PBA: Have you heard about 23andme? It was a company that uses a body sample (I believe saliva and not blood, which would explain its popularity) and it tests ancestry and gives raw genetic data. It used to give health related information until the FDA shut that down very recently, because people would look up their illness related genes just stam, which they didn’t feel was necessary.
People didn’t need to know what genes they had, or whether they had genes for specific diseases. There were options to test for a whole gamut of disease-related genes, even potential Alzheimer’s-related genes, just because people are interested. One reason it was shut down was that people found they had genes for, Idunno, heart attacks, things they couldn’t really do anything about, and they were panicking to their doctors. All for nothing, because what should they do besides what they’d be doing anyway?
In this day an age, people simply like to know things. Perhaps now that 23andme, which I believe is the only non-doctor-related system that did health-related tests, has been closed down, there will be less of a frenzy now that people will probably be more likely to base it off of a doctor’s recommendation. However, you certainly still can get genetically tested like this, and the same resources that allow Dor Yeshorim to test for Tay Sachs can allow the scientist checking for BRCA1 to test for Tay Sachs as well.
So,
1) Yes, they can. I’m sure you know that genes are just ATCG and there isn’t an essential difference between the gene predicting Tay Sachs and the gene predicting breast cancer besides for order, methylation, which chromosome, etc. The same effort it takes you to test for mutations in the BRCA1 gene as for mutations in the HEXA gene (Tay Sachs). Very different from going to Key Foods.
2) I don’t particularly currently want to get tested for Tay Sachs. Many do. Before 23andme closed their health testing division, my dad wanted to get tested by 23andme. He has no particular reason, he just wants to know about his genetics. I think it’s a slippery slope, but it’s definitely a legitimate viewpoint. Whether you think it’s stupid or not, people DO think that way and people DO get tested on their own. That’s the issue at stake here- that people do do it on their own, not whether they should.
And for the record, if I did want to know, it would be out of (intellectual? or am I fooling myself) curiosity, not out of stigma. I don’t know where you got the idea that would be why. I don’t think it’s a stigma to have a recessive gene, as I’ve said a number of times.
3) Of course that’s the explanation, and that’s why I acknowledged that this isn’t a monopoly so much as a niche. Their model makes perfect sense insofar as it goes. I honestly don’t have a real tayna with them as an organization. I just don’t see why they care if I figure out my own genes. It’s not so much that they don’t give me my results (that’s not their job) but that they care if I find out another way.
Basically, I know that while Dor Yeshorim exists there will never be a perfect answer. All I’m trying to say is that there is a reason why people might conceivably want to be tested twice. If it was accepted in my personal circles to test at somewhere besides Dor Yeshorim, where they give results, I would do that instead without a second thought, but while this system is in place, I will do it twice if I so decide.
As far as stigma is concerned, I don’t even think that a stigma could start from knowing the results of Dor Yeshorim testing, because the likelihood of an Ashkenazi Jew NOT having a recessive gene for SOME Jewish genetic disease is incredibly remote. That’s the POINT of Ashkenazi Jewish genetic diseases- that they’re COMMON in Ashkenazi Jews because of inbreeding. In fact, the people with the most of them (or who are most likely to have them) are probably the ones with the best yichus (as they’d keep marrying into other families with comparable yichus, which are probably related to each other- as in chasidishe rebbes’ families), so the ones with the fewest mutations for genetic diseases would have the stigma, and they’ve already got one :). I accept if people don’t want (others to) know, but I still don’t think it makes sense.