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Ethical and financial stakes – are they seriously considered?

Published on 08/27/2013 in Press releases

Friday, 28 September 2012
PRESS RELEASE

Bioethics:
Are the fundamental changes being announced going to be the topics for debates?
Are the ethical and financial stakes being considered seriously?

While the Biomedicine Agency is presenting its annual report in which it highlights the important of “regulatory stability” and transparency in the topic of bioethics, the Jérôme Lejeune Foundation is questioning the French political leadership on two worrying challenges.

Embryo research: The principal of protection will become an exception

The Senate Committee on Social Affairs is examining this Wednesday, 3 October, a draft law from the RDSE group whose aim is to introduce “a regime of controlled authorisation for research on embryos and embryonic stem cells”. This text, aiming to replace the current system based on a principle of bans on embryo research, associated with exceptions, is expected to be examined in a public session on 15 October.

The President of the Republic indicated during his campaign that he wanted to strike out the ban on human embryo research. Now, this transformation would be a reversal of French law around this fundamental ban: “the law assures the primacy of the person, forbids all reduction of the dignity of the person, and guarantees the respect of human beings from the beginning of life” (article 16 civil code). This is an unprecedented paradigm change where the protection of human beings becomes an exception to the new rule of non-protection.

Mr Hollande had placed at the centre of his campaign promises the desire to respect the fundamental basis of the republican pact and also the importance of public debate. We must ask ourselves why he supports this parliamentary initiative, especially as the organisation of public debate is a legal obligation before any modifications to the bioethical law *.

On this occasion, the Jérôme Lejeune Foundation holds that, in the matter of cellular therapy, citizens and their representatives do not have access to all the information. The considerable financial stakes are never made explicit. The Foundation demands that the Biomedicine Agency the requirement it was given in the bioethical law of 2011 to present to the Parliament a comparative report of the advancement of research on stem cells (embryonic and non-embryonic). Otherwise, on what basis can parliamentarians change a system that has not been subject to an evaluation?

New prenatal diagnostic test for Down syndrome: an astounding silence

A new prenatal diagnostic test for Down syndrome coming from the United States is on sale in some European countries from this summer.

In France, clinical studies have already started to evaluate the reliability of this new technique. One of these, highly publicised in the last few weeks, is being carried out partly thanks to public funds.

Now, this test raises major bioethical concerns (tending towards eugenics).
Further, it offers such a lucrative future that it triggered speculation on the stock market in the US, followed by an investigation by the SEC (Securities and Exchange Commission).

At its press conference after the summer vacations, the Biomedicine Agency declared only that it will be necessary to debate the issue faster than anticipated. It has been several years since the announcement that these tests were coming, but no debate involving citizens had been initiated.

If nothing else, it is necessary to shine some light upon:

  • The hundreds of millions of euros that France is already dedicated to widespread screening of Down syndrome for over 15 years, the effect of which is to eliminate 96% of a population on the sole criterion of its genome (is an objective of 100% being targeted?);
  • The status of those who are both advocates of the new diagnostic tool, and are also hospital practitioners, laboratory consultants, and experts within organisations, with the capability of driving public choices

* L1412-1-1 French Code of Public Health: “All reform projects around ethical problems and the questions of society raised by the progress of knowledge in the biological, medical or health domains must be preceded with a public debate in public forums.”

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Press contact : Guenièvre Brandely - This email address is being protected from spambots. You need JavaScript enabled to view it.

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