The Ethics of Genetic Testing

This week has been busy. Two papers and one test all on very disparate subjects. It’s hard to cram all that into your brain sometimes – to wit: I think I bombed my biopsych test, which is a little disappointing considering how hard I studied and how well I have been doing in that class.

I’ve been paying more attention to some new and interesting topics lately that got me thinking. I want to talk about mental health, genetics and genetic testing, and what that means ethically and lawfully.

But first! An extremely basic lesson in genetics: on DNA there are four different nucleotides: adenine (A), guanine (G), cytosine (C), and thymine (T). These are repeated in different orders and a given sequence of them makes up a gene that codes for a specific protein that the cell will then produce. A sequence of three alleles (or three nucleotides) is called a codon. Since there are 4 nucleotides, there can be 64 (4x4x4) codons in genetic code.

Huntington’s Chorea is a degenerative brain disorder that is genetic. It is a repetition of CAG. If you have 11-35 repetitions of this you are probably safe, but if more than that, you could develop the disease. The more repetitions the greater the risk. Two facts to keep in mind: I say “could” because it also depends on your environment and stressors, and people can be genetically tested for this disease. Many people do not get tested because if one of their parents had it, they are likely to too, but they may not. Can you imagine the stress of getting the results from the lab that say you are highly likely to develop a disease that makes parts of your body uncontrollable, speech difficult, unable to learn new movements, memory impairment, hallucinations, delusions, etc, ending in death? I think ignorance is bliss in this case.

Scientists have also recently developed an objective test for bipolar disorder I (formerly: manic depression). This is interesting because the mood disorders can be hard to diagnose, but an objective test like this could be a big step forward, especially in preventative treatment. Apparently the following numbers, though not perfect, are not far from similar tests.

The predictive value of the BioM-10 Mood panel was tested on the initial group of study subjects and found to have an 85 percent accuracy in predicting high mood and 77 percent accurate in predicting low mood.

There are ethical problems that come from these kinds of tests though. And these tests are only going to become more available as the human genome project and others work on these problems. What happens when insurance companies find out you are XX% likely to develop a disease? I had a friend with diabetes who had a hard time finding insurance because of his “pre-existing condition,” what about conditions you might have? Do we test fetuses for diseases, and if they have the genetic code to make them likely to have a disease, abort it? Is the latter responsible citizenry (as it would reduce medical costs in the long run), eugenics or inhumane, or giving up on hope (since they are only likely – not positively going to develop the disease). Where do we draw the line: do we test everyone for Huntington’s disease but not bipolar disorder? Once we have the tests for them: Schizophrenia and criminality (Antisocial Personality Disorder – psychopathy)? Many of these things are influenced by nature, but none of them is 100% determined by one’s genes.

Someone foresaw this problem. Paul Wellstone drafted the Mental Health and Addiction Equity Act that is working its way up the ranks right now. It passed in the house in early March and is now waiting for senate approval. I think I read that the white house supports the bill, so there is hope. The bill has two parts: insurance companies would have to insure mental health the same way they insure physical health – by the doctor’s standards, not what the insurance companies deem worthy of their time and money; the second part recognizes the genetic testing issue and states that insurance companies would not be able to discriminate who they insure based on a genetic predisposition an individual might have.

Overall I think the genetic tests are a good thing. But legislators will have to recognize the need for new laws regarding the tests and how their information should be used. Wellstone was right to bring this to their attention. The disappointing part is that while 98% of democrats voted for this bill, only 24% of republicans did. Their argument is that this will raise the cost of insurance and force more people to live without it. While there may be some truth to that, the cynic in me thinks it’s simply an issue the insurance lobbyists getting what they want: to not pay out anymore money than they have to.