Wednesday, August 17, 2005

Who put these jokers in charge of decision making? Whatever else we disagree on, we can at least agree that there should be proper wide-ranging debate and a transparent, accountable, democratic Parliamentary process

I was amazed to be told recently by a senior journalist, who out of fairness I will not name, that I should not pursue a particular line of argument in an interview, because "the public won't be interested"! The line of argument I was pursuing is that decisions on major ethical issues and scientific experimentation - such as whether to allow the creation of designer babies, human cloning, or the creation of animal human hybrids - should be made by Parliament following thorough public and parliamentary debate, not by unelected bureaucrats behind closed doors, who are not accountable to anyone. It is perhaps true that our Parliament system is not entirely perfect, but at least parliamentary democracy gives the opportunity and hope that the best evidence will win out, rather than allowing a few individuals, without any particular qualifications, to make decisions about the future direction of humanity based on their own whims. I also find it impossible to believe that the public is not interested in the question about who is deciding on these issues. I find it incredible that any individual can steamroll over the democratic process or that decisions can be made behind closed doors. Far from being a boring point, the question of who is making these decisions currently borders on farce, which would be almost funny if it wasn't so serious.

To take a few examples, three years ago, the Parliamentary Select Committee on Science and Technology took oral evidence from the then former chair of the HFEA, Ruth Deech. During the hearing, the MP, Bob Spink asked about the massively controversial issue of whether a baby should be created in order to provide tissue for another child, he asked: "Should that decision have been taken by the HFEA or should it have been brought back to the democratically accountable Parliament to be discussed?" To the amazement of the MPs on the select commmittee, Ruth Deech actually said, and I kid you not: "The fact that the HFEA took that decision protects Members of Parliament from direct involvement in that sort of thing". It is quite something to tell MPs to their face that they aren't capable of making complex decisions and that they need protection! She was immediately asked, "How can it be democratic if you are preventing the democrats, the Members of Parliament who are elected to make difficult decisions on behalf of society as a whole, and protecting them from having to make such complex, fundamental decisions?"

As a second example, it is often repeated ad nauseam that the HFEA is the greatest organisation in the world and a model for the world to follow, usually it has to be said by the HFEA themselves. This isn't borne out by the number of scandals involving embryo mixups, black twins born to a white couple, etc etc, but around the time that the Government was pushing through human cloning legislation in Parliament, (although they liked to call it CNR, cell nuclear replacement, so no one would think that it was cloning) the Government were also saying that there would be very strict regulation about which licences were issued, so it was very interesting to read in the appendix to the Science and Technology committee's Fourth public report, the admission from a scientist about how exactly he got his licence from the HFEA. He says that because the HFEA in fact did not know whether or not to issue the licence "the HFEA looks to the Medical Research Council for specialist input, who in turn ask for my view, with the result that I am asked my view of a ruling which I am seeking." Very rigorous. The argument has always been that if expertise does not exist in this country on cutting-edge science then we should be looking for peer review internationally, drawing on some of the expertise available on this superb website on Stem cell research.

Thirdly, The Times reported that the Times had obtained documents under the Freedom of Information Act and discovered that the HFEA had passed a secret ruling on designer babies to allow bone marrow to be taken from the child, without publicising this rule change. In fact, the HFEA's own lawyers had argued "in a pretrial submission that such screening involves “no adverse effect for the baby — indeed no invasive procedure relating to the baby”, because only cord blood is used. This is not true when bone marrow is involved." Josephine Quintavalle, of Comment on Reproductive Ethics,the pro-life group that has brought today’s case, said that the HFEA had “moved ethical goalposts” without consulting or even informing the public. “We were categorically promised during all legal hearings that tissue-typing would result only in non- invasive applications, dependent exclusively on harvesting stem cells from the designed baby’s umbilical cord blood,” Ms Quintavalle said. “The HFEA resisted with self-righteous indignation any accusations that saviour siblings were being set up as future bone marrow donors. Now the HFEA has completely changed its mind by suggesting that bone-marrow donation is OK after all. Bone-marrow donation is invasive and can be painful and never more so than for a tiny newborn baby, who derives no benefit from the procedure and is unable to give consent. “The concept that a baby should be created with this specific purpose in mind goes beyond the comprehension of compassionate and civilised citizens.” The authority ought to have done much more to make its decision public, she added. “The ethical decisions of the HFEA should be blazoned across every newspaper in the country, instead of being cunningly buried in committee meetings.”

5 Comments:

Anonymous Anonymous said...

Isn't there a word for presenting the courts with false information as the Times says the HFEA did in their pretrial submission?

1:25 AM  
Anonymous Anonymous said...

I was interested to read that the scientist admitted to the select committee that he granted his own licence application.

I guess this is a rhetorical question, but was the licence withdrawn, and if not, why not?

3:30 AM  
Anonymous Sana said...

You should have named the journalist! it was very unfair of them to have a go at you about your arguement you should have got him or her back by naming and shameing them! lol
oh the sun newspaper mentality has gone to my head again....

6:18 AM  
Blogger Fiona said...

I think there is a distinction between a journalist saying something in a private conversation, and making a public statement either in writing, broadcasting or at an event. The first should be respected as a private matter, and in the second it is legitimate to quote them.

6:43 AM  
Anonymous Maria said...

Well done Fiona - sometimes a small independent web-log is the only source of truthful reliable information on a subject! This is the only freedom of the press on 'life and death' issues like these that we get today!
Keep up the good work!

3:15 AM  

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