by NexDev | April 29, 2016 | Bioethics
On April 22, French Health Minister, Marisol Touraine, announced the launch of an online survey whose admitted purpose is labeled “to help the exploitation and sharing of health data, while respecting private life, for all actors having a project of public interest”. The internet surfer can thus give his advice on the use of his personal data in the medical field (Big Data).
The Health Law, voted in December 2015, provided for the creation of a « National System of Health Data » an information platform partially “open”, which means at the public’s disposition (open data). This enormous data base should collect the data from the national information system for all the different health insurance systems “(Sniiram)” and from the medical program of hospitals’ information systems “(PMSI)”. Therefore, this represents an enormous amount of data, originating from health insurance and complementary health organizations, hospitalizations, causes of death etc.; which represents, every year, 1.2 billion healthcare treatment forms, 500 million medical acts and 11 million hospitalizations.
The current “Sniiram”, a national information system for all the different health insurance systems, is a medical administrative database which contains the historical data of reimbursement for health care. For the Court of Accounts, it is a treasure “unequaled in Europe with respect to the number of individuals managed and the diversity of the data available”. In a report requested by the National Assembly and published on the site public Actors, the same Court enrages against the current blockage of health data managed by health insurance, all the while denouncing leaks in security. The National Commission for computers and liberty “(CNIL)” fears that it will be possible to identify the individuals behind this “anonymous” data.
For the past few years, we have witnessed a genuine explosion of computer connected objects which provide data on our habits and physical condition: for example, the bracelets recording cardiac rhythm or connected contact lenses recording the blood glucose level for diabetics. Thanks to ‘big data’, everyone is able to compare his personal data with that of other users to measure how he compares to the rest of the population (which we call “quantified self” or “self-measurement”). More and more professionals in the medical field are becoming interested in this data.
by NexDev | April 29, 2016 | Bioethics, Press Releases
During the seminar of the Federation of European Academies of Medicine (FEAM) which was held in Paris on April 28, 2016, the French National Medical Academy voiced an opinion in favor of developing research on human embryos and reproductive cells. For Alliance VITA, this position which is at the same time vague and worrisome, raises questions and concerns.
The Medical Academy even recommends adapting the necessary texts for the development of this research in France and in Europe.
However, the Academy points out that with the current state of knowledge, it is inconceivable and undesirable to consider clinical applications: that is to say to give birth to an infant from an embryo subjected to in-vitro DNA modifications.
Promoting these research studies already constitutes crossing the red line, the first step on a sliding board towards eugenic and trans-humanistic perspectives. In fact, if the techniques are efficient, and prove in the future that embryos conceived in this manner are viable, there will be a strong temptation to procreate genetically programmed and modified children. Thus they will be life-long guinea pigs for a technique which created them from scratch.
On April 29, during the debates at « Human Gene Editing » in Paris on the use of the CRISPR-CAS9 technique, our country should be at the ethical forefront, as it was for example on major issues such as cloning, and contribute to promote ethical guidelines for research.
ALLIANCE VITA recalls that by the endorsement, given in 2004, for research investigations which cause the destruction of human embryos, the door was opened to practises that were forbidden yesterday and are recommended today. The living human embryo should be protected against all kind of experimentation violating its integrity; because using embryos and then destroying them is contrary to the dignity of all human beings.
by NexDev | April 28, 2016 | Bioethics, Medically Assisted Procreation
Researchers at the Valence Institute in Spain and at the American University in Stanford, California, have announced succeeding in developing human spermatozoids from skin cells. This work was published April 26 in Scientific Reports, the online journal of the review Nature.
To obtain this result, adult skin cells were collected, and « reprogrammed » to become germ cells, then spermatozoids, using a cellular reprogramming technique called “IPS” developed by Yamanaka and John Gurdon, respectively Japanese and British Nobel Prize winners in Medicine in 2012.
The resulting spermatozoids are not yet able to fecundate. “It is a spermatozoid but it requires a supplementary maturation phase to become a gamete. It’s only the beginning” explained Carlos Simon, the scientific director for the Infertility Institute in Valence.
To carry on with these studies, the team plans to continue their research in Great Britain, since the following step, the creation of an “artificial embryo” is authorized in that country.
The objective of this technique is to overcome some forms of sterility. “This is the problem we intend to tackle: creating gametes for those who do not have any”, asserts the Spanish researcher. Other unprecedented possibilities are visible, such as creating embryos from the gametes of two individuals of the same sex.
Producing spermatozoids from various components is a challenge that numerous research teams in the world would like to meet. However, these techniques are raising serious ethical issues, since the result of such experiments is nothing less than the artificial creation of a new human being.
by NexDev | April 26, 2016 | Bioethics
Gene editing techniques, especially CRISPR-Cas9 are becoming increasingly more popular since their prospects and ethical issues are so important: two important international meetings will be held next April 28 and 29 in Paris, under the auspices of the Academy of Medicine.
In 2015, the American Medical and Sciences Academies launched « Human Gene Editing», an initiative to study the issues related to new gene editing techniques.
This initiative has been organized in several stages.
First of all, an international symposium, co-organized with the Chinese Science Academy and the British Royal Society, was held in Washington in December 2015, on scientific, ethical and governing questions related to research using human genome editing techniques.
Afterwards a multidisciplinary international committee was created to carry out more detailed studies on the scientific basis of these genetic engineering techniques, on their potential biomedical and medical applications – including that on human stem cells – and their clinical, ethical, legal, and social implications. This committee of experts, a majority of whom are Americans, started the process of collecting information during this first summit in Washington. Henceforth, it is also its role to maintain a scientific watch, made necessary by the rapid development of these techniques, to compile research literature from American and foreign workshops, to request a wide participation from researchers, clinicians, and decision makers, as well as from the public. This committee is expected to publish a report before the end of 2016, a study which should take into account the official position of the American Academy of Science and Medicine. This committee organized a second summit in Washington on February 11, 2016.
The next step is the third summit to be held in Paris on April 29th at the National Medical Academy. This meeting will focus on the political aspect and the governing principles underlying human genome editing. One of the round table discussions will be dedicated to potential applications for stem cells: human gametes and embryos.
On the evening before the meeting, April 28th, a working symposium will also be held at the Medical Academy, in addition to the Committee, organized by the Federation of the European Federation of Medical Academies on the state of science and the rules on human genome editing in the European Union. The purpose of this workshop is to foster discussion among experts to determine if common European directive guidelines can be laid down and provide information to the public and relevant entities. A round table will be dedicated to the research and to applications on human stem cells.
by NexDev | April 22, 2016 | Medically Assisted Procreation
During the commission’s meeting for social issues at the Parliamentary Assembly for the Council of Europe last April 20, the rapporteur for Surrogacy, Petra de Sutter (“Green” Environmentalist party, Belgium), whose report had been rejected last March 15, maneuvered the presentation of a new report with the support of the Commission’s new president.
In a tense atmosphere, the other members of parliament had no choice but to accept that the commission should continue to address this question without changing the rapporteur, who is nevertheless suspected of conflict of interest. Petra de Sutter proposed drafting a report with two options: either condemning commercialized surrogacy or defining a legal frame centered on protecting the child’s interests.
Caroline Roux, Director of VITA International, states « this maneuver is completely alien to a true democratic spirit. It is unbelievable that the same individual actually proposes the same objective to legalize some forms of surrogacy in a new report, when the preceding report was just rejected. This is clearly a way of preventing a genuine debate, especially as no real alternative is proposed to condemn all forms of surrogacy, as was recommended by the European Parliament by a large majority last December. Whether it is considered business or not, the original mistreatment of children born in these circumstances can never be repaired, neither can the exploitation of the bodies of these women which constitutes an unprecedented estrangement.”
Alliance VITA is an active member of the international group No Maternity Traffic. This group submitted a petition of over 100,000 signatures by European citizens requesting that surrogacy be universally forbidden. Alliance VITA remains committed to achieve this goal.
