by NexDev | May 27, 2016 | Medically Assisted Procreation
On Friday May 27, 2016 France’s Council of State examined an appeal by a Spanish woman who is requesting the transfer of her deceased husband’s semen for post-mortem insemination, a practice which is prohibited in France. The public rapporteur did not oppose the transfer in light of the “very particular circumstances”.
In July 2015, Mariana Gonzalez-Gomez’s Italian husband, Nicola Turri died of cancer. At that time, the couple was living in Paris. He had had his sperm frozen prior to his first chemotherapy treatment in 2013. His lawyer explained that the couple had decided on Assisted Reproductive Technology (ART) treatment shortly before his death. Mr Turri had “left a kind of testament in which he wished for his wife to be able to use his semen after his death”. The young Spanish lady then requested retrieval of her husband’s sperm for a post-mortem insemination in Spain, where she currently lives, and where this practice is legally authorized.
The French Biomedicine Agency is opposed to sperm retrieval by CECOS at the Tenon hospital in Paris. French law only permits medically assisted reproduction (including artificial insemination) for male-female couples who are living and forbids post-mortem retrieval of sperm or embryos which must in theory be destroyed after the death of the patient.
The public rapporteur, Aurélie Bretonneau, referred to this situation as being an “exceptional” case, and recommended the export of cryogenic sperm “straws” to Spain. The pleadings of the lawyers and the Council of State were based on article 8 of the European Human Rights Convention on the right to a private and family life. According to one of the lawyers, “A refusal would be an infringement on a fundamental right, the right of having a child and of being a parent in the biological sense of the term.
The final decision of the Council of State will be known in a few days.
It is important to bear in mind that French law wants « the child’s interest to be the priority of the legislator” as stipulated by the Council of State during the 2011 revision of bioethical laws. The conditions for access to medically assisted reproduction should be as close as possible to natural reproductive functions. “To authorize post-mortem embryo transfer would jeopardize this fundamental requirement, (…) of giving a child, at the beginning of his life, a family with a father and a mother. To legalize this practice, even for a small number of cases, would have a major impact on family law.”
The public rapporteur’s position seems to endorse “the right to a child”, even if it is in very particular circumstances, and this is in contradiction to French law, and goes against the best interests of the child, who appears to be completely forsaken in this issue.
Is it really in the child’s interest to be deliberately conceived without a father (with sperm from a man, who is already dead,) during the mourning period following the father’s death? Five years earlier, France’s Counsel of State reminded in the previously cited report, that one of the profound reasons for their opposition to post-mortem transfer was that the “child born from post-mortem embryo retrieval might be exposed to factors which could contribute to imbalance or psychological hardship associated with the position of a child born out of grief”.
by NexDev | May 27, 2016 | News, Palliative care
On Thursday May 26th, the Administrative Appeals Court in Nancy, France examined the request submitted by Vincent Lambert’s nephew, who is yet again demanding the withdrawal of life-sustaining treatment for this young man who is in a poorly-relating state. The public rapporteur has asked the Reims University Medical Center to resume the collegial decision-making procedure which can lead to discontinuing artificial nutrition and hydration considering that “there will never be any peace of mind in this case” referring to the family quarrels concerning this issue for the past three years.
Doctor Daniela Simon, who replaced Doctor Kariger, suspended this collegial decision-making procedure on July 23, 2015, judging that “the climate was not safe and sound enough to go on” according to the University Medical Center’s statement.
A decision from the tribunal is expected by June 16, but it is still possible to file an appeal in the Court of Cassation at the State Council.
Vincent Lambert’s parents have filed an appeal to request the examination of the recent appointment of the patient’s wife as legal representative.
Next June 9th the guardianship judge will have to decide on the appointment of a legal representative outside of the family. This would allow for Vincent to be transferred to another medical center, better adapted to the care of patients with brain damage.
by NexDev | May 26, 2016 | Bioethics, Human embryo research, Press Releases
Press Release, May 26, 2016
76% of the French are against using CRISPR-Cas9 for human genome-editing
On Tuesday, May 24, 2016 Alliance VITA teams informed and warned the public with their national citizen campaign “Stop GM Babies”. Launched simultaneously in 75 cities throughout France, this campaign is meant to inform and alert citizens about the ethical and human challenges related to the use of CRISPR-Cas9 technology.
Most passersby were both surprised by and interested in the documents and explanations provided by Alliance VITA volunteers. It is the first time that an association takes to the streets to discuss the CRISPR-Cas9 issue with citizens. This major discovery is currently turning the scientific and biotechnological research world up-side down. The applications of this technology demand a citizen debate and at the same time, a real investment on the part of public authorities.
On the same day, Alliance VITA released the results of the opinion poll “French citizens and the CRISPR-Cas9 technology» which was performed on May 19-20 by IFOP. Ninety-one per cent of the surveyed people had not yet heard about this technology. If 76% of the French are in favour of using CRISPR-Cas9 for patients in the treatment of hereditary diseases, they are as many people (76%) who are against using the technology to perform in vitro modifications on human embryos. Sixty-seven per cent of the individuals interviewed declared being concerned and the same proportion (68%) think France should take an action to demand international regulations for human genome-editing (DNA). The results of this opinion poll is a confirmation that the warning launched by Alliance VITA is well timed
In addition to the information campaign carried out throughout the country, Alliance VITA invites all individuals to visit a dedicated website : Stop Bébé OGM in order to better understand what is at stake and to take part in the debate. The catchphrase “Yes to therapeutic progress – no to human transgenic embryos” gives a fair idea of Alliance VITA’s request : they are willing to encourage therapeutic perspectives and at the same time warning against the dangers of experiments which are particularly dangerous for humanity.
This is why Alliance VITA is simultaneously launching a call to sign the petition: “Stop GM Babies” on the web site Change.org. As the General Delegate for the association, Tugdual Derville confirms the need for this call, “On such a major subject, it is essential that everyone’s voice should be heard. The exponential mutations in biotechnology have brought major social and political challenges. It must not be left to specialists who are inevitably judge and jury.
Due to its tradition, France is expected to have a different viewpoint on bioethical subjects as compared to other countries which are rushing into the commodification of the human body. At a time when politicians are busy with other subjects, and sometimes obsessed with electoral prospects, we wish to remind our government officials that their role is to protect humanity from a few sorcerers’ apprentices whose Promethean ambition could put us all in danger.
Whereas many individuals view biotechnological developments as a cause for concern and uneasiness, we want to reaffirm our support to scientists and researchers, particularly in the possible therapeutic applications thanks to Crispr-Cas9 technology; yet we are opposed to transgenic embryos produced from scratch, as already implemented in China and more recently in Great Britain.”
The next step in this campaign is set for the end of June. Alliance VITA will address the three recipients of the call* requesting that France should undertake action to secure a moratorium for all applications of the CRISPR-Cas9 technology on reproductive cells and human embryos. There will be more calls to action in the following weeks in other cities of France and on social networks.
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*The President of the French Republic, François Hollande, the Minister of Health and Social Affairs, Marisol Touraine, and the Minister of National Education, Higher Education and Research, Najat Vallaud-Belkacem
![CRISPR-Cas9: 76% French citizens against genetic modifications of human embryos (Poll)]()
by NexDev | May 25, 2016 | Bioethics
Poll “French citizens and the CRISPR-Cas9 technology”
IFOP – May 2016 with Alliance VITA
Translation : Alliance VITA
Link to original French version :
http://www.ifop.com/?option=com_publication&type=poll&id=3394
Comments by Jérôme Fourquet, Director of the Strategy and Opinion department at the poll institute Ifop.
1) – Visibility of CRISPR-Cas9
Question: Have you already heard about the CRISPR-Cas9 technology?
The CRISPR-Cas9 genome-editing technology is hardly known as yet which could explain why there is practically no public debate concerning the recourse to this technology. Only 9% of the French declare having already heard about it and 3% assert understanding what it is about. Even among those with a higher education (12%) and free-lance professionals and executives, who are traditionally better informed, the level of knowledge is very low.
CRISPR-Cas9 technique allows to modify rapidly and cheaply DNA of all plant, animal or human cell. Currently, it concerns all fields of activity (agriculture, medicine, research, industry).
When applied to patients, this technique could improve scientific knowledge about cell functioning, and develop treatment for genetically inherited diseases.
It can also be applied to human embryos, to create genetically modified babies. Long before the baby was born, it could be possible to ablate or modify a disease-related gene, or to add a different gene to modify the human embryos with new characteristics and selected criteria.
These modifications would be transferable to future generations.
CRISPR-Cas9 applications on human embryos, germline or adult cells, are still being developed and show that uncontrolled reactions can appear.
2)- Willingness to use CRISPR-Cas9 on individuals suffering from hereditary diseases
Question: Would you be for or against the use of this technology on adults or children suffering from a hereditary disease in the context of genetic therapy to cure them or improve the quality of their life?
3) – Willingness to use CRISPR-Cas9 to perform in vitro modifications on human embryos
Question : And would you be for or against the use of this technology to perform in vitro modifications on human embryos ?
Once explained and presented to the persons interviewed, this genetic technology creates very contrasted opinions. Seventy-six percent of the French would be favorable to using CRISPR-Cas9 on adults or children suffering from a hereditary disease in the context of genetic therapy to cure them or to improve the quality of their life. But on the other hand, exactly the same proportion (76%) were against (with 40% very much against) to having recourse to this technology to perform in vitro genetic modifications on human embryos. However there is no real inconsistency and the results of the survey show that while this technology raises hopes and can be seen positively in the context of therapy for people suffering from serious diseases, society clearly bans genome-editing of human embryos, and sees it as an open door to eugenics.
4)- Willingness to use CRISPR-Cas9 to modify one’s own embryo in vitro
Question: And would you be for or against the use of this technology for in vitro genetic modifications of your own embryo?
5) – Concern regarding the acceleration of scientific modifications on the human genome
Question : Would you say that you are concerned or not regarding the acceleration of scientific modifications on the human genome ?
6) – Expectation regarding France’s role in establishing regulations for DNA modifications
Question: Do you think that France should commit to requesting international regulations for this practice of human genome-editing (DNA)?
by NexDev | May 24, 2016 | Press Releases
On Tuesday May 24, Alliance VITA is launching the awareness-raising campaign « Stop GM Babies », to inform and alert the public about the ethical challenges related to the new CRISPR-Cas9 genome-editing tool.
Information booths will be held in 75 cities by Alliance VITA volunteers who will meet French citizens and offer to sign, on the Internet site change.org, the call to “STOP GM BABIES” launched the same day.
>> To sign the petition: www.change.org/stopbebeogm
>> To better understand the challenges and to take part in the debate: www.stopbebeogm.fr
Why is Alliance VITA calling to action ?
Simultaneously innovative, promising and risky, the CRISPR-Cas9 technology holds great promise for curing a variety of genetic diseases, particularly hereditary illnesses. It raises serious ethical questions however, regarding specific applications to human embryos or germlines.
Countries such as China, Great Britain, or Sweden, have already started experiments on human embryos using this genome-editing tool, which are destined to be destroyed. Yet, some ethical regulations urgently need to be implemented. We should not use embryos as tools to be manipulated. And this can only be achieved if we ban genetically modified embryos. This is the reason why we address a call to “Stop GM Babies” to the French President, and both the Health and Research Ministers.
The baseline of this campaign, «Yes to therapeutic progress – No to transgenic embryos » gives a fair idea of this challenge.
What is at stake?
The main risk is to treat human embryos as « guinea pigs for life» in experiments. Yet, the utopian dream to produce a post-human zero-defect GM baby would be endorsed, whereas the consequences of genetic modifications on embryos are not yet fully known nor mastered, and carries the risk of mutations to be transmitted to future generations.
Call to action in France, to raise awareness at the international level…
Appealing to « Stop GM Babies » is a first worldwide step to get citizens involved in the ethical debate regarding CRISPR-Cas9 technology.
Alliance VITA is starting this campaign in France, partly because France plays a key role in countering the Anglo-Saxon or Asian utilitarian approach, which has no limit in the commodification of human life.
