Opinion: Ethical Issues Surface

[nicole]

Its always interesting to read about new quality science and two new genetic oriented studies in Nature give us just that – quality science.

The first of two Nature studies released today found that 65 percent of autistic participants shared a variation between cadherin 10 and cadherin 9, a region of the genome that controls cell-adhesion molecules in the brain. Those molecules help brain cells connect, and autism researchers have long suspected that trouble there may be linked to the disorder.

The second study suggested a link between autism and an excess of genetic material associated with ubiquitin, a protein involved with cell-adhesion molecules and connections between brain cells.

Truly fascinating stuff it looks like and yet I think the time is fast approaching when the need for an ethics debate about this becomes paramount.

I am on record as saying that I do not think science could be (as oppose to should be) curtailed when following research interests. In other words, we couldn’t stop an autism researcher from finding a cause or cure even if we wished to. Politics and research science are a bad mix.

However, that should not ever stop us from debating how to use (if at all) such a thing and the following statement from one of the research members is – to me – a bugle call to start thinking of ways we (the autistic community and the scientific community) can do this and remain on good terms:

If we could remove this variant from the population, just take it away … as much as 25 percent of autism would disappear, which is highly significant,” Hakonarson said.

It is indeed, highly significant. It opens up not only a world of scientific possibility bit it must also open up a genuine debate about the ethical issues surrounding this. But before we do this we need to clarify statements like this. 25% of the entire ASD population? 25% of an individual? 25% of the more disabling aspects of autism? 25% of what exactly?

So we need to clarify things like this. Lets hope we can do this very soon and start a respectful debate between two camps who have worked well together up till now – science and neurodiversity.

Source: Two new genetic studies - care required

[mnballetmom]

While a bit different, my daughter and I talk about her having kids all the time. She is only 14, but at this point in time, she wants to adopt and not pass on her genes. This is a gifted dancer, wonderful writer, smart, strong, beautiful young lady but she sees what's happened to us and knows what we went through as a family when things went seriously south for her. She doesn't want to go through it as a mother, and doesn't want to make another child have to go through it.

I try to impart to her all the of the gifts that she has to pass on, along with a few problems - and that it's a decision that she has a long time to make.

[nicole]

May 17, 2009 13:27:12 GMT -5 mnballetmom said:

While a bit different, my daughter and I talk about her having kids all the time. She is only 14, but at this point in time, she wants to adopt and not pass on her genes. This is a gifted dancer, wonderful writer, smart, strong, beautiful young lady but she sees what's happened to us and knows what we went through as a family when things went seriously south for her. She doesn't want to go through it as a mother, and doesn't want to make another child have to go through it.

I try to impart to her all the of the gifts that she has to pass on, along with a few problems - and that it's a decision that she has a long time to make.

Hopefully she will reconsider, although I certainly get why she feels that way. She sounds very mature for her age.

The ethics considerations re genetic testing are like a huge sinkhole that unless we tread lightly, and very carefully, I worry that we will be swallowed up, and it could go anywhere. Scary, imo.

[mnballetmom]

It isn't just what we lose if 25% is gone - as I've stated so many time in the Carrey thread, it's also whether we can trust the system with the information.