That last criterion is extremely interesting, as it could allow current disease patients to block the widespread adoption of testing to eliminate that disease.

You mean for things that some think of as a disease and many do not? – like:

“Deaf demand right to designer deaf children”
http://www.timesonline.co.uk/tol/news/uk/health/article3087367.ece

I think the section may have arisen from the early history of compulsory sickle cell testing in the US – this from http://www.scienceprogress.org/2008/05/a-brief-history-of-genetic-testing/

Sickle cell testing between 1970 and 1972 was mandatory in 12 states and targeted African-Americans. Misunderstanding was rampant, perhaps because the term “sickle cell trait” for carriers suggested that their condition was somehow visible. What they carried was stigma. At the time, the disease could not be prevented, tested for before birth, or treated. So why identify carriers?

This seems like a pretty good example of a case where the desires of parents will clash with the suggestions of ethicists: from a parent’s perspective, why should a current sufferer of a disease be able to prevent me from doing my best to have healthy children?

I think this is saying no such thing – merely that the NHS will not attempt to roll out a national program if there is serious opposition to it.

In addition, it’s unclear to me whether you’re suggesting that these criteria for providing an NHS-funded screening programme should also be extended to decisions about whether or not to permit a commercial entity from offering carrier screening to UK citizens.

No. Like many here, I believe that genetic testing should be registered and regulated to keep the bottom-feeders out of the market, but I was mainly responding to your suggestion that carrier testing would become “routine” once the price came down and the utility goes up – it needs more than that.

And if so, if the data aren’t yet available to satisfy all of the criteria, should these tests be banned?

In my view, no. What we’re facing is a lack of data, not ethical roadblocks.

That last criterion is extremely interesting, as it could allow current disease patients to block the widespread adoption of testing to eliminate that disease. This seems like a pretty good example of a case where the desires of parents will clash with the suggestions of ethicists: from a parent’s perspective, why should a current sufferer of a disease be able to prevent me from doing my best to have healthy children?

In addition, it’s unclear to me whether you’re suggesting that these criteria for providing an NHS-funded screening programme should also be extended to decisions about whether or not to permit a commercial entity from offering carrier screening to UK citizens. And if so, if the data aren’t yet available to satisfy all of the criteria, should these tests be banned?

I suppose I see morality as a practical subject for all, rather than a topic just for the philosophers. However, I agree that there is no requirement to engage with any and everybody on a topic, especially if you can see that the answer is pre-judged.

As it is in this case.

In the UK, there is already a national antenatal screening programme looking at fetal abnormalities, and a newborn programme looking at “phenylketonuria (PKU), congenital hypothyroidism (CHT), sickle cell disease (SCD), cystic fibrosis (CF) and medium-chain acyl-CoA dehydrogenase deficiency (MCADD)” i.e. already including some recessive disorders for which from-birth treatments are indicated – see http://www.screening.nhs.uk/policydb.php for a full list of all programmes considered.

Extension to carrier testing “merely” requires it to pass the usual screening criteria – http://www.screening.nhs.uk/criteria – the most relevant of which are:

• 4. If the carriers of a mutation are identified as a result of screening the natural history of people with this status should be understood, including the psychological implications.
• 9. If the test is for mutations the criteria used to select the subset of mutations to be covered by screening, if all possible mutations are not being tested, should be clearly set out.
• 14. There should be evidence that the complete screening programme (test, diagnostic procedures, treatment/ intervention) is clinically, socially and ethically acceptable to health professionals and the public.
• 15. The benefit from the screening programme should outweigh the physical and psychological harm (caused by the test, diagnostic procedures and treatment).
• 19. Adequate staffing and facilities for testing, diagnosis, treatment and programme management should be available prior to the commencement of the screening programme.
• 22. If screening is for a mutation the programme should be acceptable to people identified as carriers and to other family members.

I’m sure somewhere this is being put together as a proposal right now.

The excellent EMBO paper you cite ends in a much more nuanced way – that the morality of the issue is important, simply a scientist has no privileged contribution to make

I’m not saying the moral issues here aren’t important in a metaphysical sense (although, like Leroi, I don’t have the background to contribute usefully to that discussion), just that they’ll have very little practical impact on whether or not these technologies are adopted. If you think that there are moral objections that will be sufficient to overcome the parental desire to have healthy children and thus halt adoption of carrier testing, however, I’d be very interested to hear your argument.

Another key road-block is a social one: engineering the systems required to explain the results from these tests to large numbers of people, most of whom have very little understanding of genetics. The medical system is currently entirely unequipped to cope with an influx of this type of genetic data; yet cope it must, as the wave is coming fast.

You’re right, but on the bright side I think that interpreting results for common multigenic diseases would be much more difficult for medical doctors. I believe this is a great step towards the end of recessive diseases, as you say. Regarding eugenics, the word frightens more than its meaning.

Protests from ethicists and ministers may lead to some entertaining talk radio discussions, but ultimately the desire of parents for healthy children will sweep aside all objections (just as moral objections to tissue transplants and IVF were swept aside for similarly pragmatic reasons). In the face of this implacable tide I find it difficult to get too engaged in the moral debates on these issues; they just seem like a waste of time.

The excellent EMBO paper you cite ends in a much more nuanced way – that the morality of the issue is important, simply a scientist has no privileged contribution to make:

Some readers might find it peculiar that in this discussion of neo-eugenics, I have not considered the ethical or legal implications with which this subject is generally considered to be fraught. Although I do not doubt their importance, I simply have no particular knowledge of them. Peter Medawar put it best 40 years ago: “If the termination of a pregnancy is now in question, scientific evidence might tell us that the chances of a defective birth are 100 percent, 50 percent, 25 percent, or perhaps unascertainable. The evidence is highly relevant to the decision, but the decision itself is not a scientific one, and I see no reason why scientists as such should be specially well-qualified to make it”