Law on bioethics: when bioethics rhymes with biopolitics

Since 1994, our legislation relating to bioethics has had the mission of anticipating the societal consequences of advances in biomedical research and of supervising innovations according to the principles of “French bioethics”.

LThe 1994 text, revised twice in 2004 and 2011, is the subject of a third reshuffle, started in 2018 and planned to last until 2021. These regular revisions bear witness to the concern to identify, in the course of scientific developments, their societal challenges within the framework of a dialogue that manages to preserve both the balance between our values ​​and the dynamics of competitive research in the service of the common good.

On the night of July 31 to 1er August, before a four-fifths empty hemicycle, the National Assembly, after 37 hours of debate and 1250 amendments, adopted at second reading the bill on bioethics.

This is only a step, since the text will come back to the Senate, before a joint committee made up of representatives of the two chambers tries to find an agreement which, already, is announced. difficult with regard to dissensus between deputies and senators. This step was no less important since we know that, in the event that any compromise would prove to be impossible, it will be up to the National Assembly, during a third reading, to decide on the final version. of text.

Before evoking the points to remember the second reading vote in the National Assembly of the bioethics law, a reminder is needed about the specificity of this legislation, which many countries did not consider necessary to adopt.

Evaluate scientific developments

The bioethical debate is at the heart of democratic life. It affects not only the meaning we give to human dignity, our representations of what the person is, our duties of solidarity and justice, but also the justification and acceptability of interventions likely to upset our relationship with humans, our anthropological references. This shows the importance and interest of the process of revising the law, in both form and substance.

Consultation must therefore be pluralist, reasoned, prudent, respectful of the diversity of points of view and convictions, in order to aim for a consensus preserving a spirit of measurement where ideological positions threaten. To achieve this, everyone must be able to appropriate knowledge that is often complex and evolving.

It is in fact a question of taking a position with regard to scientific and technical developments, and of evaluating them according to their emergence: are they founded, justified, acceptable (sometimes under certain restrictive conditions, as is the case of embryo research)? Or on the contrary are they incompatible with our principles?

This review is therefore a meeting of a particular nature, since it concerns our present responsibilities with regard to the possibilities offered by biomedical research in sensitive areas such as medically assisted procreation (AMP), access to origins for people born thanks to gamete donation, genomics, neurosciences, embryo research, artificial intelligence, organ transplants, etc.

Current examples include the current refusal of surrogacy (surrogacy) or partner egg reception (ROPA), which would consist in a couple of women in transferring eggs from the to each other as part of in vitro fertilization (IVF).

The revision of the text of the law relating to bioethics also engages our responsibilities towards future generations.
With regard to scientific promises, what risks are we ready to assume, what renouncements are we in favor of, can intangible limits still be set for research? And if the answer is "yes", according to what criteria?

The new territories of bioethics

The reconfiguration of our world according to the aims and operating methods imposed on us by GAFAM and BATX, whose capacities to intervene in our lives and our societies now seem to defy any need for regulation, justifies our vigilance and measures. appropriate.

The algorithms used in the processing of health data allow both to develop the performance of medical imaging, to produce new molecules, and with the analysis of DNA to come to know our origins and even, in a way. prospective, the risks of developing a disease.

In return, what about the health data market and the risks it generates, particularly in terms of individual rights and freedoms, if only in the use by insurers of discriminatory personal information? The data market is valued at $ 68,75 billion by 2025.

The new continents of bioethics must be explored by equipping themselves with anticipatory capacities and effective means of regulation, so as not to reduce bioethical consultation to a procedure of legislative validation of developments which impose their logics and rules. A difficult challenge to take up in the globalized and digitized world that is now ours.

The limits of a national bioethics

Biomedical research is developing in a context of international competition determined by issues of national sovereignty, academic evaluations, particularly through publications, as well as financial considerations subject to the requirements of both rapid and substantial returns on investment. In such a way that the hierarchy of research themes, the conditions for the development and sharing of knowledge, the strategies of technological innovation and the valuation of research may prove to be in contradiction with the principles of research ethics and scientific integrity. The current controversies relating to the therapeutic approaches of Covid-19, testify in this regard to questionable practices.

In an international scientific environment which is not very homogeneous from the point of view of the interpretation and use of the principles of bioethics, “French bioethics” carries little weight. Speaking example if any, that of the fertility market offer, estimated at around $ 25 billion by 2025. The question of surrogacy is also emblematic: children from surrogacy practiced outside our territory are now recognized in their inalienable rights. This decision, which improves their legal situation (in particular in the event of divorce of the parents or the death of one of them), at the same time weakens France's resistance to what it still considers to be an instrumentalisation. of the woman's body incompatible with her values.

In addition, access to techniques prohibited in our country has no borders except the cost of interventions abroad. This observation leads some to consider this economic discrimination as unfair. Their existence should, according to them, encourage them to authorize in France what is possible elsewhere.

A revision that was not well publicized

La 2018 revision was committed under good conditions: publication of quality reports (Council of State, CCNE, National Academy of Medicine, Biomedicine Agency, in particular), organization for four months of general meetings on bioethics with the relay of 'a dedicated site, then in-depth parliamentary reports.

We can however notice that there will have been a lack of events of national or international scope, or of the thematic conferences which were essential. As if the government wanted to avoid exposing itself too directly. Because the outstanding political stake was the access of couples of women (or single mothers) to medically assisted procreation, in the dynamics of the law n ° 2013-404 of May 17, 2013 opening marriage to same-sex couples.

As we know, the controversy worried our political leaders, for whom it was a strong symbol to respond, in fact, to a quantitatively limited demand (we estimate of the order of 3200 the use of AMP to the foreigners by women who cannot benefit from it in France).

Therefore, we can only notice the contrast between the importance given to the vote at first reading on October 15, 2019 by 545 parliamentarians, and the Augustian discretion that surrounded the last vote, on July 31 by 101 deputies, "on the sly" according to some voices of the opposition. It is not the Covid-19 which explains the surreptitious vote of this law on bioethics at the end of July: it certainly deserved better than this concealed approval, low noise, without grandeur and in fact so little publicized ...

And now ?

The bill will continue its course in November at second reading in the Senate, before its final vote. It is obvious that the bioethical emergency is put into perspective, in the light of so many other priorities in the context of the current health crisis caused by the Covid-19 epidemic, with its feared economic and social consequences.

Was it then wise to get this law passed under these conditions? The government considered it necessary, politically since it was for him, by legislating on the "PMA for all" to honor an electoral promise. This situation gives us to understand to what extent bioethics is today assimilated to biopolitics. It is not only a question of considering biomedical advances from a preventive or therapeutic point of view, but just as much in their societal, and sometimes political, function.

In fact, during these revisions, it is advisable to assess the level of acceptability of society to scientific practices which upset our representations, to the point of depriving us of benchmarks all the more essential with regard to the transformative power of the techniques which influence our lives and the living. This observation must be accepted with lucidity in the perspective of the next revision which, on the other hand, will have to better take into account the difficulty of affirming principles, of setting a limiting framework when our sovereignty (including bioethics) is threatened by technological advances.

In this regard, it is important to pay more attention to the science-society debate and to restore in this area a relationship of trust affected in recent years by so many breaches of scientific integrity. In the field of bioethics, as we mentioned previously, the academic issues of publications with regard to the interest of a research project or even the direct interest of the people included in the study, could lead to some useful recommendations.

CCNE has aptly titled its summary report of the general states of bioethics "What world do we want for tomorrow? »
It is not obvious that we still share the sense of responsibility to which such a requirement of bioethical questioning engages. At a time when the importance to be given to the future of the environment seems finally on the way to being taken into account, we should also understand that agreeing together on the future of human beings is as worthy and urgent as it is to worry about that of our planet ...The Conversation

Valerie Depadt, Senior Lecturer in Law, Sorbonne Paris Nord University - USPC et Emmanuel Hirsch, Professor of medical ethics, Paris-Saclay University

This article is republished from The Conversation under Creative Commons license. Read theoriginal article.

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