No surprises from the HFEA in today’s decision to permit exclusion and non-disclosure testing, and to deregulate later onset, lower penetrance conditions. The relevant regulations governing pre-implantation genetic diagnosis become yet more permissive.
As CORE correctly anticipated last week, the Authority has re-stated its official position that discarding healthy embryos is entirely permissible if it at the same time decreases the likelihood of any embryo with disability getting through the net. That is what happens in exclusion testing. Embryos are tested for their DNA origins but not for a specific condition.
In yet another display of dubious ethical reasoning, the HFEA has actually concluded that exclusion is preferable to non-disclosure testing. In other words, the inevitable destruction of healthy human embryos is more desirable than the specific destruction of only those with genetic disease.
But hang on, wasn’t the original justification for PGD to identify and preserve healthy embryos for implantation?
And what is the rationale behind the less popular non-disclosure, a process where all embryos are tested but the parents are not told which ones were affected or the nature of the genetic disease? It is up to clinicians to decide which embryos (if any) will be implanted, thereby protecting the parents from any uncomfortable genetic information they would rather not know about.
As ever, it is difficult to unravel the ‘ethical’ stances adopted by the HFEA. With one test (exclusion) they support a libertarian entitlement to genetic testing on the part of the consumer at the expense of the embryo, but then their role becomes overtly paternalistic (non-disclosure) as they shield the consumer from the truth of this test’s results.
If you want more detailed information on this issue, contact CORE by e-mail firstname.lastname@example.org or telephone 020 7581 2623