Genetic discrimination

[Esper]

I read about a proposed law that would let an employer have access to your medical records including genetic tests (which would be offered to employees). These kinds of tests seem to be fairly cheap and probably in the future nearly everyone will have access to them.

But what happens to people in a world where we all know this genetic information and it's easy for people in power to know your information?

What I read about was the potential of an employer not to want to hire you if your genetics indicate a higher than average likelihood of a disease (and in my country employers are often the ones supplying medical insurance) because that would cost them more down the line. A similar thing could probably happen for people getting medical coverage from government or elsewhere.

Another issue might be trouble with relationships, especially if you want to have children, if people can find out your genetic info.

Are these fears founded? If they are, to what degree? What could be done to mitigate the negative effects? How do you feel about the idea of knowing your predisposition to certain diseases and having other people know as well?

 

[Nah]

There's not much reason to believe that (some) people wouldn't misuse the information really.

 

[Hermione Granger]

I think genetics should be personal, not for employers to see. Since employers can use this to discrimate you, not saying ever employer would do it, but some will.

 

[Nihilego]

Your post is very strongly weighted towards the negatives of this proposed law. For the sake of facilitating a balanced discussion, could you state what the positives are (or at least, are said to be)?

In any case...

Are these fears founded?

Definitely.

If they are, to what degree?

It's hard to say since no company (or, well, almost anyone else) will admit to genetic discrimination. However, the only people on the planet who need access to your genetic information are you and those involved in your healthare, so if some random company is looking at your genetics then... well, I find it hard to believe that they're doing so with good intentions.

What could be done to mitigate the negative effects?

As I said above, it's hard to really answer this question without knowing the possible gains. Right now I'd just say "don't give people access to your genetic information", haha.

How do you feel about the idea of knowing your predisposition to certain diseases and having other people know as well?

I'd like to know, because I think it's sensible to have a realistic idea of which diseases I might run into in future and if I have kids, if there's any chance of them being predisposed to those diseases. If I am vulnerable to a disease which could profoundly impact my life and the lives of my family, it seems like a good idea for me to know about it in advance so that I can prepare for that. That said, I understand that not everyone would want to know for a number of reasons, so I absolutely think that this sort of service should be entirely optional, and should not be requestable by anyone other than the individual concerned. Like most personal information, the results should be private, i.e. between the individual and their healthcare team - it is up to the person to decide who else, if anyone, should know.


tl;dr it's a good idea for personal use, but the information is of a very private nature and should be available only to the individual and healthcare professionals. Employers have absolutely no business knowing this information.

 

[Nihilego]

Something else that I think is worth mentioning: there's only so much that you can tell about an individual and their likelihood to get a disease from a single sample of their genome. There's a huge amount about what's going on in the body's cells and tissues which can't be detected from DNA alone, and some diseases involve alterations to DNA only within the tissue afflicted with that disease (cancer is one such example -- the DNA in breast cancer cells may differ drastically from the DNA in, say, skin cells). Other examples might include things like cardiovascular disease as a result of blood pressure problems or blockages in the circulation - DNA tells us very little about these possibilities. I've picked these two examples specifically because, if I remember right, cardiovascular disease and cancer are the two biggest killers of adults in the West. So there's only so much that DNA can tell us about an individual's propensity to some quite common conditions, and companies would need either a full-body health check complete with scans etc. or multiple DNA samples from different tissues to be able to make a sound conclusion regarding someone's likelihood to develop a previously undiagnosed disease. Another point to be made is that many severe diseases caused by germline alterations to DNA will already have been diagnosed by the time that someone is employable, although this is certainly not always true.

Moreover, although this is a lesser point since companies would find ways around this, analysis of raw genomic data for diseases can be actually quite challenging if you're not a biologist by trade. Even for people capable of working with this information, deciding on how relevant it is and what to do with it is still challenging; after all, if we all understood what diseases do and how they work, we wouldn't need doctors. Finally, although massive advances have been made over the past couple of decades, sequencing an entire human genome is still a somewhat expensive and time-consuming process, and will certainly be unfeasible to do for everybody for some time yet.

The point I'm making is that this sort of information is probably of limited use to companies and still has feasibility issues. Of course, this assumes that these vaguely-defined "tests" look at the entire genome of an adult, which might not be the case; if so then maybe they don't hold true.

 

[Esper]

Your post is very strongly weighted towards the negatives of this proposed law. For the sake of facilitating a balanced discussion, could you state what the positives are (or at least, are said to be)?

I didn't want to make this just about that so I tried to use it as a segue.

But anyway, the bill (The Preserving Employee Wellness Programs Act, HR 1313) is being touted as a health bill that would help individuals to be better informed about their own health. It's a kind of "workplace wellness" program (and therefore no subject to GINA - The Genetic Information Nondiscrimination Act of 2008). The committee that approved it put out a statement that said it would give employers ?the legal certainty they need to offer employee wellness plans, helping to promote a healthy workforce and lower health care costs.? So, basically, the idea behind the bill is lowering healthcare costs. The idea behind that is that if you help your workers stay healthy now they'll be less likely to get sick later, or that you'll catch something before it progresses too far. "An ounce of prevention is worth a pound of cure." That basic idea is good, I think we can all agree.

The sticking points people have with it are: 1) how the law would provide penalties (thousands of dollars) to those who opt out of the genetic testing, 2) those who do agree would have to give their genetic information (a kind of privacy concern) to their employers, 3) who would be allowed to share it with third parties, and 4) the genetic information wouldn't necessarily be indicative of future illnesses because, for instance, having a predisposition to heart disease doesn't mean you will develop heart disease.

The fear is that of a kind of genetic discrimination - people not getting hired because employers see they have a predisposition to some potentially expensive illness, people getting fired for the same reason, and being replaced with someone who has "better" genes.

 

[Somewhere_]

If you get your health insurance through your employer, this could be an issue. And that fact that insurance is even offered through employers is already a major problem because it increases market prices (by adding an in-between) and probably detracts from your salary or wage (which wouldnt be an issue if the healthcare price remained about the same).

So these higher prices in tandem with employers being able to discriminate based on health- Esper covered this well.

Personally, I think this is something to worry about. It gives too much power to employers that they shouldn't have. The access to particular information is powerful, which is why we have laws against insider trading and the like.

 

[Majestic Electric]

I think anything regarding someone's genetics should be for the doctors' and patient's eyes only. It's not the employer's business. Also, theoretically speaking, refusing to hire someone based on their genetics goes strictly against the Genetic Information Non-Discrimination Act of 2008, so employers couldn't refuse such a thing without breaking the law.