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Bioethics News

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  • Critique of Proposed Law on Assisted Death by Ethical Collective

    A group called “Democracy, Ethics, and Solidarity” has released their first report about a proposed law that would make it easier for people to choose to end their own lives, also known as assisted suicide and euthanasia. This report is about 30 pages long and comes after a year of discussions. They are concerned that this law could give people almost unlimited access to these practices.

    The group is led by Emmanuel Hirsch, a professor of medical ethics, and Laurent Frémont, a constitutional law teacher. It has 101 members, including important figures like Jean Leonetti, who helped create the current end-of-life law, and former health ministers François Braun and Elisabeth Hubert. Other notable members include Claire Fourcade, head of a society for palliative care, and Hervé Chneiweiss, who leads an ethics committee.

    In 2022, another group had supported the idea of “active help to die,” but this new report presents a different perspective. Some members of the group aren’t against changing the law, but they want any changes to make sense and respect medical ethics.

    The report argues that the current proposed law could allow a doctor to approve a patient’s request to die within just 15 days, without needing a team of doctors to agree. After that, the patient would have only 48 hours to confirm their decision, which could be done verbally and without any record. This raises concerns that it could be easier for someone to get euthanasia than to find proper pain management.

    The authors of the report believe that the law would change fundamental ideas about society and our responsibilities towards vulnerable people. They argue that legalizing these practices would make people question their will to live, especially if the law suggests that helping them die might be the preferred option.

    Furthermore, the group highlights a troubling trend of glorifying those who travel abroad to end their lives through euthanasia or assisted suicide. They argue that this pushes the idea of suicide while ignoring the need to support mental health and prevent suicide, especially at a time when mental health awareness is being promoted.

    In summary, the group is worried that this proposed law could lead to serious ethical issues and change how we view life and death in society, especially for those who are struggling with health issues.

    This article has been translated and simplified by artificial intelligence from a French article “Une loi pour établir « un droit à une mort provoquée » au terme « d’une procédure anormalement expéditive » : le collectif Démocratie, Ethique et Solidarités publie son premier avis”
    It may therefore contain errors. The French version is the reference version.    .

  • UN Report Condemns Eugenic Practices in Europe

    Recently, the United Nations (UN) examined the practices related to prenatal screening, abortion, and forced sterilizations in Europe. The Committee on the Rights of Persons with Disabilities (CRPD) raised serious concerns about these issues during their meeting on March 11 and 12.

    One major concern is the “discriminatory eugenic behaviors” in prenatal screenings. The committee highlighted that people with intellectual or psychosocial disabilities, as well as autistic individuals, are particularly affected by these practices. The CRPD urged the European Union to take long-lasting measures to combat stigma, discrimination, and ableism in prenatal diagnostics and to provide adequate support for families raising children with disabilities in their communities.

    The UN also pointed out that some medical protocols can be discriminatory and that there have been higher mortality rates for people with disabilities, especially during the COVID-19 crisis. The committee stresses the need for guidelines to ensure equal access to life-saving treatments, particularly in medical emergencies.

    Another concern involves new technologies like artificial intelligence and automated decision-making. The CRPD emphasized that people with disabilities should have the right to consent to the use of their health data and should be able to control their personal information, which requires user-friendly interfaces.

    The committee also raised alarms about the integrity of individuals with intellectual and psychosocial disabilities. They reported that some people undergo “irreversible, invasive, and harmful treatments,” including forced sterilizations, abortions, and contraceptives. The UN has called for an end to these non-consensual practices.

    The CRPD highlighted the importance of all the recommendations made in their final observations, and the next report on these issues is expected on November 23, 2032. It remains to be seen if Europe will take the necessary actions.

    This article has been translated and simplified by artificial intelligence from a French article “Dépistage prénatal, IVG et stérilisation forcées : l’ONU épingle les pratiques eugénistes de l’Europe”
    It may therefore contain errors. The French version is the reference version.    .

  • Concerns Over Financial Implications of Assisted Suicide in Oregon

    On March 27, the Oregon Health Authority (OHA) released new statistics about assisted suicide in the state. In 2024, 607 people were given prescriptions for lethal substances, which is an increase from 561 in 2023. By January 25, 2025, the OHA had reports of 376 deaths in 2024 due to the use of these prescribed substances, a slight decrease from 386 deaths noted in 2023. Among those who passed away in 2024, 43 had received prescriptions in previous years, and 23 patients lived for over six months after getting their prescriptions. The OHA did not refer any cases to the Oregon Medical Board.

    Many patients expressed feelings of “loss of dignity,” and some had financial concerns regarding their treatment. Cancer was the most common illness among those who died, with 57% suffering from it. Like in previous years, the top three concerns for these patients at the end of their lives were loss of independence (89%), reduced ability to enjoy life (88%), and loss of dignity (64%). Additionally, 42% felt they were a “burden” to their family or caregivers, and 9.3% mentioned financial implications of their treatment. Only 34% expressed concerns about inadequate pain control.

    Only three patients underwent psychological evaluations, while 337 informed their families about their decisions.

    Since the law allowing assisted suicide was enacted in 1997, a total of 4,881 people have received prescriptions, and 66% (3,243 individuals) have died as a result. Assisted suicides accounted for 0.9% of all deaths in Oregon in 2024. In 2023, the law was changed to remove the residency requirement, and in 2024, 4% of prescriptions were given to people living outside the state.

    Since 2020, the law has allowed for a “waiver” of waiting periods for patients expected to live less than 15 days after their initial request. In 2024, 179 patients, or 29% of those who received prescriptions, were granted such waivers. For others, the waiting period varied from 1 to 727 days, with a median of 25 days.

    There have been reports of “complications” in a few cases. Data shows that the time from ingestion of the prescribed substance to death varied significantly, from 7 minutes to 26 hours, with a median time of 53 minutes. Complications were noted in only 9 cases, including difficulty swallowing or regurgitation in 7 instances, seizures in another, and one unspecified complication.

    The number of doctors writing lethal prescriptions dropped in 2024, going from 168 in 2023 to 135. On average, these doctors knew their patients for about 5 weeks before they requested assisted suicide, although there were cases where there was no prior doctor-patient relationship. Overall, 55% of those who received prescriptions in 2024 died by assisted suicide that same year, while 15% died from other causes, and information was missing for 178 patients.

    This article has been translated and simplified by artificial intelligence from a French article “Suicide assisté dans l’Oregon : des patients inquiets des « implications financières de leur traitement »”
    It may therefore contain errors. The French version is the reference version.    .

  • Influence of Interests on Gender Transition Studies

    Recently, there has been a lot of discussion about hormone treatments for transgender people, especially after CNN reported that these treatments could help improve mental health for adults who identify as transgender. However, some experts are questioning whether this is really true. Pauline Arrighi, a journalist and author, has analyzed this topic in detail.

    In an article in the New England Journal of Medicine, two doctors and a lawyer claimed that research has shown that access to gender-affirming care is always beneficial. They highlighted the need to oppose laws in the United States that limit such care. They also mentioned that major medical organizations support these treatments. But what does this support really mean?

    One concern is the financial interests behind these treatments. The New England Journal of Medicine has sponsors that include big pharmaceutical companies like Pfizer and Bayer, which produce hormones used in gender transitions. It’s noteworthy that one of the doctors, Jack L. Turban, receives funding from companies like Arbor and Pfizer as well.

    Not all transgender individuals take hormone treatments, but many advocates claim that these treatments can help with feelings of gender dysphoria, which is the distress caused by a mismatch between one’s gender identity and assigned sex at birth. For example, some girls may take synthetic testosterone to look more like boys, while transgender boys might take testosterone blockers or a mix of hormones that are usually prescribed for women experiencing menopause.

    This push for hormone treatments represents a new market for hormones that are already available. For pharmaceutical companies, supporting gender transition treatments can be a profitable business.

    Additionally, there are concerns about the influence of certain organizations. An article in Le Monde referenced a study from doctors who run a clinic for transgender minors in Paris. This clinic partners with several transgender support groups that are linked to WPATH, a global organization focused on transgender health. WPATH provides guidelines for medical professionals on how to support transgender and gender-diverse individuals, but their recommendations lack strong scientific backing and have faced criticism.

    One major issue is that the first guidelines for puberty suppression in transgender youth were based on a study involving just one person. Later recommendations were also flawed, leading to doubts about their reliability. Leaked communications from WPATH members revealed that even some experts within the organization are uncertain about the safety and effectiveness of their treatment methods. They acknowledged that some young patients may not fully understand the implications of hormone treatments, such as infertility.

    Despite these concerns, there continues to be strong promotion for gender transitions, particularly among minors, driven by both ideological and financial interests. This situation raises important questions about the true motivations behind the push for hormone treatments and the implications for young people considering these options.

    This article has been translated and simplified by artificial intelligence from a French article “« Transition de genre » : des « études » sous influence”
    It may therefore contain errors. The French version is the reference version.    .

  • End-of-Life Debate: Legislation on Lives, Not Concepts

    Before discussing two proposed laws about end-of-life issues in France, the social affairs commission of the National Assembly held hearings with various associations. These hearings took place on a Tuesday evening, and the president of the commission, Frédéric Valletoux, limited each group to just five minutes to speak, despite their request for ten minutes. He argued that it was getting late and they needed to start the debate quickly.

    During these hearings, different associations shared their views on end-of-life care, and it was clear that there were strong differences in their beliefs. For example, Dr. Olivier Trédan from Alliance VITA emphasized that the role of healthcare providers is to care for patients, not to assist them in dying. In contrast, Dr. Denis Labayle from the Association Le Choix spoke about helping people die in countries like Switzerland and Belgium, with little reaction from the audience.

    Yoann Brossard from the Association for the Right to Die with Dignity argued that self-determination should guide lawmakers, but Véronique Bourgninaud from the Jérôme Lejeune Foundation countered that legislation should focus on real, living people rather than abstract ideas about freedom.

    Some critics argue that the proposed laws manipulate language to avoid discussing the issue accurately. Dr. Claire Fourcade pointed out that the title of the law only mentions “end of life,” which could confuse people about whether they are legalizing euthanasia or just discussing end-of-life care. She raised important questions about what “end of life” really means, emphasizing the need for clear language in this debate.

    Véronique Bourgninaud shared her personal experiences with disability and fragility, warning that legalizing euthanasia could create pressure on vulnerable individuals to end their lives. She expressed concern that society might begin to view those who are weak or dependent as less worthy of life.

    However, some lawmakers and euthanasia advocates dismissed these concerns. They argued that examples from countries like Belgium, the Netherlands, and Canada did not reflect the potential risks of such laws. Many believe that the push for these laws is more about ideology and economic considerations rather than addressing the real suffering people experience at the end of life. Critics like Jean-Marie Le Méné warned that while palliative care is expensive and may only be available to the wealthy, euthanasia may become the option for those who cannot afford it.

    This article has been translated and simplified by artificial intelligence from a French article “Fin de vie : « Vous n’allez pas d’abord légiférer sur une certaine idée de la liberté ou de la fraternité, mais sur des personnes, des personnes bien vivantes ! »”
    .

  • CCNE’s Cautious Take on Declining Birth Rates and Fertility

    The National Consultative Ethics Committee (CCNE) recently released a report titled “Decline in Birth Rates and Fertility: Different Responses, Shared Ethical Issues.” This report follows a request from the former health minister, Frédéric Valletoux, who asked the CCNE to provide insight into the ethical issues surrounding infertility on June 20, 2024. However, the report does not directly respond to that request and does not offer clear ethical recommendations either. Instead, the CCNE provides “perspectives,” which may confuse the issues at hand.

    The request was focused on infertility, but the CCNE chooses to first discuss birth rates. This can be misleading because the solutions to infertility challenges and declining birth rates differ significantly, and their ethical considerations are often in conflict. The report emphasizes the importance of considering the child’s well-being in society, which contrasts with infertility issues that focus on the couple’s desires. The CCNE states that the interests of the child do not always align with the goals of parents wishing for a child. Therefore, combining these subjects in one report creates confusion about the issues and the possible solutions.

    In discussing the decline in birth rates, the CCNE details various cultural, economic, and social reasons why fewer people want children. For instance, a recent survey found that 13% of women do not want children, a significant rise from 2.6% in 2006. The reasons given include personal fulfillment (91%), climate and political concerns (81%), and financial or family issues (63%). The age at which women are having children has also risen, contributing to the decline in births. From 1973 to 2023, the number of births dropped from 888,000 to 678,000, and in 2024, it continued to decline, with only 663,000 births.

    The report questions whether medically assisted procreation (MAP) could be a solution to reverse the decline in birth rates. However, it appears that this is not the case, as the birth rate continues to fall despite an increase in the use of MAP. The CCNE acknowledges that while improving the success rates of MAP might help, it would only have a limited impact on overall birth rates. MAP mainly addresses individual desires rather than providing a long-term solution to declining fertility.

    Additionally, the CCNE points out the risks associated with MAP for both couples and children. It mentions potential health issues that can arise from MAP procedures, which makes it surprising that the CCNE seems to position MAP as the primary solution for infertility. This approach does not empower couples but rather puts them at the mercy of medical professionals and procedures.

    After discussing the causes of declining birth rates and the limited role of MAP, the CCNE presents some “perspectives” for future legislation on bioethics. However, it remains cautious and does not provide strong recommendations. Despite this, the report hints at certain ideas that might influence upcoming reforms in bioethics, such as promoting the preservation of gametes (sperm and egg freezing) and potentially opening access to foreign gamete banks, which could require changes to current French laws.

    Furthermore, the CCNE suggests that improving genetic diagnostics related to infertility could lead to more discussions on the topic. It recognizes the need for more debate about infertility rather than merely addressing birth rates.

    The report also touches upon two specific issues regarding MAP: post-mortem MAP and ROPA (the reception of oocytes from a partner). The CCNE notes that healthcare professionals and patient associations are generally supportive of these practices. It questions why it is acceptable to allow a child to be born to a single mother through MAP but not to allow post-mortem MAP.

    In conclusion, the CCNE’s report sheds light on the complex relationship between declining birth rates and infertility but stops short of making definitive recommendations. As future bioethics discussions unfold, particularly those anticipated to begin in 2026, there may be more clarity on issues like post-mortem MAP and ROPA, as well as other evolving technologies in reproduction.

    This article has been translated and simplified by artificial intelligence from a French article “Baisse de la natalité et de la fertilité : un avis timide du CCNE”
    .

  • UK End-of-Life Bill: Amendments Rejected Amid Controversy

    On November 11, 2024, Labour MP Kim Leadbeater introduced a bill in the House of Commons called the Terminal Ill Adults (End of Life) Bill. This bill would allow assisted suicide for adults who are terminally ill, meaning they have a disease that can’t be cured and are expected to die within six months. However, they must be able to clearly express their wish to end their life without any outside pressure.

    The bill aims to ensure that only those capable of making informed decisions, according to the Mental Capacity Act of 2005, would have access to assisted suicide. Importantly, it states that people with mental health issues or disabilities would not qualify unless they have other health problems that justify their request.

    If this bill becomes law, doctors wouldn’t be forced to offer assisted suicide to patients. Instead, they would need to discuss all available options with patients who are nearing the end of their life, especially focusing on palliative care, which is aimed at easing suffering.

    After a positive vote on November 19, the bill is now being reviewed for changes by a committee. A significant change proposed could disrupt the process: some MPs who originally supported the bill are now against the revised version. Initially, the bill stated that any request for assisted suicide must be approved by a judge to ensure it meets legal criteria. However, Leadbeater believes this could delay the process for patients and suggests replacing the judge with a multidisciplinary team that includes a psychiatrist and a social worker.

    Opponents of the bill have raised other concerns. Conservative MP Danny Kruger criticized the removal of the requirement for doctors to guide patients towards palliative care while also being allowed to offer assisted suicide. Dr. Ilona Finlay, a palliative care doctor, pointed out that patients might see assisted suicide as a viable option suggested by their doctor, which could create pressure to choose that path.

    An amendment to the bill that would have required patients to have access to palliative care before considering assisted suicide was rejected. Health Secretary Wes Streeting, who opposes the bill, warned that patients might feel pressured to request an end to their life due to a lack of alternatives. A recent report found that over 20% of patients who needed palliative care in the UK do not have access to it, even though it can help them live comfortably.

    The original bill also stated that assisted suicide should not be available to those who cannot express a free and informed wish to die. This is particularly important for people with cognitive disabilities, like Down syndrome, who need protection from being influenced by others. An amendment aimed at providing better information and longer reflection periods for these individuals was also rejected. Moreover, the bill allows individuals as young as 16 to be offered assisted suicide.

    With 30 MPs announcing they will withdraw their support for the bill, its chances of passing have become uncertain. The final decision will also depend on the House of Lords, which tends to be more conservative than the House of Commons.

    This article has been translated and simplified by artificial intelligence from a French article “Dons de gamètes : l’ABM reconstitue ses stocks”
    It may therefore contain errors. The French version is the reference version.    .

  • Down syndrome: medical research, the primary driver for inclusion and innovation

    Down syndrome: medical research, the primary driver for inclusion and innovation

    To mark World Down’s Syndrome Day on March 21, over fifty researchers from 13 countries [1] are calling for more resources to be devoted to research, and for the inclusion of affected people in clinical trials to be guaranteed.

    Down syndrome: medical research, the primary driver for inclusion and innovationOn this March 21, 2025, initiatives are flourishing around the world to celebrate inclusion, welcoming of differences, continued defense of individual rights, and the promotion of well-being of people with Down syndrome. As international researchers, with expertise in this genetic condition, we are concerned that scientific advancements promoting the health of people with Down syndrome remain largely unknown and underfunded by the public. Yet, these discoveries hold the promise of a better future for a population that remains marginalized and underserved, and who is incredibly valuable citizens of our society.

    Since the discovery of the genetic cause of Down syndrome, named trisomy of chromosome 21 (trisomy 21), in 1959 by Jérôme Lejeune, Marthe Gautier, and Raymond Turpin, the inclusion of people with Down syndrome in society has significantly improved. However, it is less well recognized that this progress has been closely linked to a remarkable increase in average life expectancy, which rose from just 9 years in the 1930’s to 20 years in the 1970’s and now approaches 60 years in some countries. This improvement is largely due to better management of co-occurring conditions frequently associated with Down syndrome – particularly cardiac, respiratory and endocrinological pathologies – thanks to positive progress in medical research and clinical care.

    Medical research is therefore a catalyst for inclusion for individuals with Down syndrome. Could improving the intellectual disability associated with Down syndrome through drug treatments and/or other interventions be a reasonable expectation? Increasing evidence suggest this to be a possibility that could open up in the future. Indeed, the triplication of chromosome 21 leads to changes in the regulation of gene expression, even beyond genes located on chromosome 21 itself. The link between the excess of certain proteins and the clinical, developmental, and cognitive differences linked to Down syndrome is now well established. Targeted therapeutics counteracting the effects of gene overexpression have the potential to ameliorate the harmful effects of gene overdosage, which is the goal of several ongoing research projects. Never before has scientific research been advancing at such a rapid pace, with a multitude of clinical trials underway, offering unprecedented hope for new approaches. One example are multiple Phase II clinical trials testing the safety and efficacy of immunomodulatory therapies aiming to reverse the immune dysregulation and chronic autoinflammation caused by triplication of the interferon receptor genes (IFNRs) encoded on chromosome 21 (NCT04246372, NCT05662228). Other examples include development of inhibitors targeting CBS and DYRK1A gene products, which are also encoded on chromosome 21. The CBS project is currently in the pre-clinical phase, while the DYRK1A project is in the first phase of clinical trials (NCT06206824). Furthermore, another trial is testing the clinical efficacy of bumetanide, to improve memory and psychological functioning in children and adolescents (NCT06465823).The most effective solution will likely not be a single treatment. Over the long term, a combination of therapeutic approaches may work together to have the best possible impact on the cognitive abilities of individuals with Down syndrome. If successful, this could lead to a significant gain in autonomy for these individuals, transforming how society perceives intellectual disability.

    When considering this perspective, the current obstacles to research, on the sociocultural and financial levels, clearly seem surmountable.
    Culturally, Down syndrome-associated medical issues have often been viewed as a subject too complex to study. For decades, it was believed that there were no effective approaches for improving intellectual disability. Furthermore, due to concerns about ethics such as informed consent, intolerance to tests, or challenges in evaluating results, people with Down syndrome are often excluded from clinical studies on other pathologies, even though they may be more frequently affected. For instance, despite their significantly higher risk of developing Alzheimer’s disease, which is driven by the triplication of the amyloid-precursor protein (APP) encoded on chromosome 21, individuals with Down syndrome are often excluded from clinical trials for new treatments targeting Alzheimer’s disease. This exclusion is largely due to concerns about their elevated risk of cerebral amyloid angiopathy (CAA), a condition that increases the possibility of brain haemorrhages in response to certain therapies. However, these same risks affect the general population as well.

    Investing in research to develop safer treatment strategies specifically tailored to individuals with Down syndrome could not only provide them with essential treatment options but also lead to advancements that improve the safety and efficacy of these therapies for everyone. The ABATE Study (NCT05462106) is currently testing a potential treatment for Alzheimer’s disease targeting the APP protein in people with Down syndrome and the Phase 1 results are promising. The HERO study (NCT06673069) is testing an antisense oligonucleotide (ASO) that APP. Furthermore, the upcoming ALADDIN study will evaluate the safety and efficacy of an FDA-approved anti-amyloid immunotherapy, specifically donanemab, for individuals with Down syndrome. All three trials are affiliated with the NIH-funded Alzheimer’s Clinical Trials Consortium – Down syndrome (ACTC-DS) which has enrolled participants across 21 international sites into the Trial Ready Cohort (TRC-DS) in efforts to bring the latest AD therapeutics to the DS community.

    The desire to welcome individuals with Down syndrome for who they are can sometimes conflict with the ambition to find treatments to improve intellectual disability. Some argue that improving cognitive function may lead to the loss of their unique characteristics, viewing it as a form of discrimination. While this mindset is more prevalent in certain countries, it is not exclusive to them. Our vision, however, is different: we believe that medical innovation can uncover the hidden yet very real abilities within each person, allowing them to thrive without altering their fundamental identity. Financially, unconscious biases persist, with the belief that individuals with Down syndrome cannot be meaningfully integrated into society. In Europe, these biases contribute to a lack of collective will to fund research on Down syndrome, leaving individuals with Down syndrome as a medically underserved population even though this condition affects 1 in 700 births.

    Funding for research on this genetic condition is marked by significant geographical disparities. In the United States, the National Institutes of Health (NIH) partnered with diverse organizations, including GLOBAL Down Syndrome Foundation, the Jerome-Lejeune Foundation, the Alzheimer’s Association, and the Trisomy 21 Research Society (T21RS), among the others, to form the Down Syndrome Consortium in 2011. Advocacy efforts, spearheaded by GLOBAL Down Syndrome Foundation, supported the launch in 2018 of the NIH’s INCLUDE Project, which has allocated > 400 million dollars to Down syndrome research until today. The INCLUDE Project support myriad basic science studies, many new cohort studies of Down syndrome, fifteen new clinical trials so far, and numerous training and career development grants. In the European Union, limited fundings has slowed progress and limited the number of breakthroughs in the field of Down syndrome research. That said, we must acknowledge the support of 12 million euros over 5 years for the ICOD project (Improving COgnition in Down syndrome, NCT05748405) and the GO-DS21 consortium (Gene Overdosage and comorbidities during the early lifetime in Down Syndrome) through the efforts of the Horizon 2020 program. Nonetheless, European funding for research on Down syndrome originates mainly from the generosity of private donors, notably via the Jérôme Lejeune Foundation, a major funder and incubator of research in Europe. In Asia, and in the global South, funding for such research is virtually non-existent.

    How can this situation be addressed? Firstly, it is crucial to raise awareness about the benefits that research for people with Down syndrome can bring, not just to people with Down syndrome, but to society at large. For researchers and healthcare professionals, Down syndrome offers a unique opportunity to gain insights into other diseases, such as congenital heart disease, sleep apnea, autoimmune disorders, respiratory issues and Alzheimer’s disease, which are more prevalent in this population, and to develop new therapies that could benefit everyone. More broadly, research for people with Down syndrome is inherently interdisciplinary, spanning genetics, neuroscience, cardiology, immunology, endocrinology, and behavioral sciences, and serves as a powerful catalyst for innovation.

    We see it every day: this field of medical research arouses great scientific curiosity, genuine passion and a strong desire to improve the lives of those affected. There is no doubt that, beyond the exciting potential outcomes, research for people with Down syndrome is a step toward achieving a more inclusive society. It provides opportunity for people with Down syndrome to feel fully engaged in a meaningful project as volunteers; it encourages them to express their needs and challenges, which may not always align with common perceptions; and it fosters collaboration among persons with Down syndrome, families, relatives, organizations and experts, with outcomes that extend far beyond the medical framework.

    Funding research for people with Down syndrome is an investment in a future where individuals with Down syndrome are seen not only seen as beneficiaries, but also as essential contributors to scientific and social progress. To achieve this, we call on policymakers, funding organizations, and the scientific community to increase dedicated research funding, ensure the inclusion of individuals with Down syndrome in clinical trials, and foster interdisciplinary collaborations. This is not just a scientific imperative—it is a human one. The time to act is now.

     

    [1] Eugenio Barone, Italy ; Renata Bartesaghi, Italy ; Laura Cancedda, Italy ; Filippo Caracin, Italy ; María Carmona-Iragui, Spain ; Cécile Cieuta-Walti, Canada ; Alberto Costa, United States ; Floriana Costanzo, Italy ; Alain Dekker, Netherlands ; Rafael de la Torre, Spain ; Fabio Di Domenico, Italy ; Mara Dierssen, Spain ; Joaquin Espinosa, United States ; Elizabeth Fisher, United Kingdom ; Juan Fortea, Spain ; Pilar Garcia, Spain ; Sujay Ghosh, India ; Ann-Charlotte Granholm, United States ; Sigan Hartley, United States ; Elizabeth Head, United States ; Pablo Helguera, Argentina ; Yann Herault, France ; Thessa Hilgenkamp, United States ; Jacqueline London, France ; Mariana Maccioni, Argentina ; Pierre-Yves Maillard, France ; Eimear McGlinchey, Ireland ; André Megarbane, Lebanon ; Laurent Meijer, France ; Clotilde Mircher, France ; Elliott Mufson, United States ; Lucio Nitsch, Italy ; Dean Nizetic, United Kingdom ; Eitan Okun, Israel ; Marzia Perluigi, Italy ; Jon Pierce, United States ; Marie-Claude Potier, France ; Michael S. Rafii, United States ; Diego Real de Asua, Spain ; Anne-Sophie Rebillat, France ; Damien Sanlaville, France ; Jonathan Santoro, United States ; Stephanie Santoro, United States ; Iris Scala, Italy ; Ignacio Sfaello, Argentina ; Brian Skotko, United States ; Fiorenza Stagni, Italy ; Pierluigi Strippoli, Italy ; Csaba Szabo, Switzerland ; Antonella Tramutola, Italy ; Rosa Anna Vacca, Italy ; Diletta Valentini, Italy ; Stefano Vicari, Italy ; Frances Wiseman, United Kingdom ; Bing Ye, United States ; Eugene Yu, United States ; Shahid Zaman, United Kingdom.

  • “Euthanasia undermines the foundations of medical practice”

    Euthanasie Stop, Andreia Cunha dos Santos Silva (04/06/2018)

    Je veux être un médecin, pas un meurtrier!

  • Lawmakers authorize Missouri to continue practising abortions until 4 June

    Lawmakers authorize Missouri to continue practising abortions until 4 June

    In Missouri, the abortion licence of the Saint-Louis Clinic, the only state clinic to perform abortions, was extended by the Court from 31 May to 4 June. The renewal of this licence shall remain pending until the new hearing, scheduled for Tuesday morning.

     

    The abortion clinic in Saint-Louis, which is run by Planned Parenthood, filed a lawsuit against Governor Mike Parson after he decided not to renew its abortion licence “for reasons of non-compliance”. In fact, the Governor has accused the clinic of “wilfully and repeatedly violating state laws”, and health authorities say they have discovered “deficiencies” during a routine inspection last March; they “demand to interview all doctors who have performed abortions during the past year at the facility”. However, the clinic’s doctors “refuse to comply with for fear of criminal charges”. Consequently, the authorities refused to extend the clinic’s operating licence, “which was set to expire at midnight on Friday”.

     

    On Friday, in a tense context of pro- and anti-abortion demonstrations, the institution brought the case before the court. Judge Michael Stelzer issued his decision at the end of the day: considering that a closure of the facility would cause “immediate and irreparable harm”, he decided that the authorization to perform abortions would be extended beyond Friday’s midnight deadline, and asked for further consideration of the case after 4 June.

     

    Republican Governor Mike Parson recently welcomed the fact that the number of abortions went “from 20,000 to 3,000″ in his state. If the renewal of the licence is not eventually granted to the Saint-Louis Clinic, Missouri will become the only U.S. state that does not offer abortion services.

    AFP (31/05/2019 – 20h53) – La clinique du Missouri menacée peut continuer à pratiquer des avortements

    AFP, Charlotte Plantive (31/05/2019 – 21h22) – La justice américaine offre un répit à l’unique clinique du Missouri où avorter

    Photo : Pixabay/DR

  • Foetal tissue research: U.S. to limit public funding

    Foetal tissue research: U.S. to limit public funding

    The U.S. Department of Health announced yesterday that it will stop “all medical research in federal centres on tissues collected from aborted foetuses”. “Promoting the dignity of human life from conception to natural death is one of the top priorities of President Trump’s administration”, he said. “The federal state cannot be complicit in these horrible circuits of buying foetal tissue from aborted babies”, said Republican Senator Marco Rubio. As a result, the public funding contract, “for an amount of two million dollars per year”, concluded with the University of California at San Francisco (UCSF) “for research work on foetal tissues” will not be renewed.

     

    However, the ban is not absolute and private research will be allowed to continue “as long as it is not co-financed by public funds”. In addition, publicly funded research projects “at other universities or research centres” will not be banned but will be subject to a new procedure involving an advisory ethics committee.

     AFP (5/06/2019)

     

  • U.S.: natural birth control methods better recognized by health authorities

    U.S.: natural birth control methods better recognized by health authorities

    The Centers for Disease Control and Prevention (CDC), the leading U.S. federal agency for public health protection, recently changed its information on natural birth control methods on their website. Until now, the site mentioned a failure rate of 24% for these methods, a figure intended to discourage couples from using them and to prevent doctors from recommending them. Today, this figure has been replaced by a rate of 2 to 23%, based on a 2018 analysis[1]. This represents a major change: a single rate that disqualified all these methods has now been replaced by a specific rate for each method. Some of them are recognized as being “at least as effective as the pill, the patch, the ring, or injectable contraceptive methods – and they help couples achieve pregnancy”. Meanwhile, older methods such as the Ogino method have been definitively discarded.

    Mercator, Gerard Migeon (5/06/2019), It’s official: fertility awareness methods can be at least as effective as the pill

  • U.S.: State of Washington legalizes the composting of humans

    U.S.: State of Washington legalizes the composting of humans

    With 3.6 million estimated deaths per year by 2037, “1 million more than in 2015”, the United States is growing concerned about the availability of cemetery space. And one state, Washington, has passed a law to allow human composting for the first time.
     Governor Jay Inslee signed the legislation on Wednesday, 22 May, and it will take effect in May next year. The bill describes the process as a “confined and accelerated conversion of human remains to soil”.

     

    The approach is part of an ecological perspective: each year, the 22,000 American cemeteries pour “16 million litres of chemicals into the ground, mainly formaldehyde, which is considered carcinogenic, 1.6 million tonnes of concrete, 47 million cubic metres of planks and tens of thousands of tonnes of copper and bronze”. As for cremation side, CO2 and mercury emissions are just as polluting, and the energy consumption would be “the equivalent journey by car from Paris to Marseille”. Approximately 1.5 million incinerations are performed each year.

     

    Katrina Spade, CEO of the human composting company Recompose, explains the process: “The body is covered with natural materials, such as straw or wood chips. Bacterial activity leads to its decomposition in the soil after three to seven weeks”.

     

    For Philip Olson, a Virginia Tech professor and specialist in funeral practices, “the innovation is considering the body as an ecological product, a nutrient, and a resource. It is composted and transformed into something used to conserve nature. It is a kind of non-religious resurrection”.

     

    The Catholic Church, in turn, criticized the move as a law that “does not show enough respect for the deceased”.

    Le Point, Hélène Vissière (06/06/2019) – Ecolos même après la mort

    CNN, Faith Karimi et Amir Vera (22/05/2019) – Washington becomes the first state to legalize composting of humans

  • GMO babies: shorter life expectancy?

    GMO babies: shorter life expectancy?

    The two GMO babies born in China following He Jiankui’s experiments have a risk of early mortality; so concludes a study published on Monday in the journal Nature Medicine [1]. Last November, when the Chinese scientist announced that he had produced genetically modified twin girls, he believed that he had made them resistant to the AIDS virus. But “genetics works like a Mikado game, in which moving a single small stick can cause many others to move”.

     

    The Chinese researcher used the CRISPR-Cas9 tool, genetic scissors that enable genome parts to be modified or replaced “just like a typing error is corrected on a computer”. He thereby created a modification on the CCR5 gene, the AIDS virus receptor. This genetic modification is naturally present in 1% of Europeans and “prevents the virus from entering host cells, making carriers resistant to AIDS”.

     

    In the study published on Monday, the researchers compiled statistics on a population of 400,000 volunteers registered in the UK Biobank register. Their results reveal that carriers of two copies of the mutated gene have “a significantly higher mortality rate between the ages of 41 and 78 than people with only one copy or none”. They also show that the Chinese twins will have a 20% lower chance of reaching the age of 76. In addition, this alteration appears to “reduce protection against other infectious diseases such as influenza”.

     

    The study’s two authors – Xinzhu Wei, from the University of California at Berkeley in the United States, and Rasmus Nielsen from the University of Copenhagen – conclude that “introducing mutations into humans via genetic engineering techniques is a considerable risk, even though these mutations seem to offer an advantage”. They also state that “witchcraft apprentices who would like to improve humans […] may achieve the opposite effect”. For Professor Graham Cooke of Imperial College London, this study “does highlight the need to understand mutations in greater detail before we consider creating them medically”.

     

    For further reading:

    The genetic modification of Chinese twins may have affected their brains

    “Genetically modified baby”: confirmation of a second pregnancy in China

    GMO babies: a mutation that could “have serious disadvantages”

     

     

    [1] Gene edits to “CRISPR babies’ might have shortened their life expectancy

     

     

    Medical Press, University of California – Berkeley (03/06/2019) – CRISPR baby mutation significantly increases mortality

    AFP, Paul Ricard (03/06/2019) –  “Bébés OGM”: leur mutation génétique associée à une plus forte mortalité

    Photo : Pixabay/DR

  • A young woman in Montreal had an abortion and wanted to keep the child

    A young woman in Montreal had an abortion and wanted to keep the child

    A young Canadian woman went to have an abortion at the Centre Intégré Universitaire de Santé et de Services Sociaux (CIUSSS – integrated university centre for health and social services), in the Centre-Sud-de-l’Île-de-Montréal in Quebec, when she was more than five months pregnant.

     

     

    The abortion procedure began with an intervention to dilate her cervix. A product causing cardiac arrest of the foetus was then injected and “a final session was scheduled at the clinic for the following day” to proceed with extracting the child. During the night, however, the patient experienced pain and bleeding and then gave birth prematurely. When the emergency personnel arrived, the young English-speaking woman “was scared stiff” and asked them to “save her child“. Although “cardiac massages were attempted on the baby,” it was in vain since he died of a cardiac arrest.

     

    The young woman was “deeply traumatized by the experience,” as were several of the hospital’s employees. An investigation is currently under way to examine the reasons why this abortion ‘failed’.

    La Presse CA, Marc Thibodeau (04/06/19) – Un avortement tourne au drame à Montréal

     

  • GMO babies: ban maintained in the United States

    GMO babies: ban maintained in the United States

    Although a committee voted last month to lift the ban on genetic modification of embryos intended for pregnancy and birth, the American Congress has in the end decided to maintain it. “While some experts argued that the United States will lag behind equivalent countries […], others feared a slippery slope towards unintended consequences and eugenics”. Worried about hindering scientific progress on the one hand, and aware of the ethical problems with “tailor-made” babies on the other hand, the Congress Committee backed down on Tuesday. The ban on genetically modifying babies, which came into force in 2016 shortly after the discovery of CRISPR technology, is maintained.

     

    For further reading:

    The genetic modification of Chinese twins may have affected their brains

    “Genetically modified baby”: confirmation of a second pregnancy in China

    GMO babies: a mutation that could “have serious disadvantages”

    Daily Mail, Natalie Rahhal (04/06/2019)

  • In the Netherlands, Noa Pothoven was not euthanized – she died of hunger and thirst

    In the Netherlands, Noa Pothoven was not euthanized – she died of hunger and thirst

    After the announcement that a 17-year-old teenager was euthanized in the Netherlands on Thursday, denial bordering on relief soon circulated on the internet, and was very quickly relayed by the mainstream media. But Noa Pothoven, who had been traumatized by several rapes, was anorexic, depressed and had attempted suicide several times, was not euthanized. She had applied in 2017 to the Levenseindekliniek, an ‘end-of-life’ clinic in The Hague, but felt that she was “too young to die”. As the young woman explained in an interview with the newspaper De Gelderlander last December: “They think I should finish my trauma treatment and that my brain must first be fully developed”[1]. She had to wait until she was 21 years old, but did not want to.

     

    During a recent hospital stay, the excessively underweight young woman was placed in an artificial coma to be fed intravenously. She no longer accepted any new treatment. She died on 2 June at the home of her parents, who had installed a hospital bed; she refused to be hydrated and fed. After she escaped euthanasia, should we really rejoice over this end?

     

    In the Netherlands today, explained Constance de Bus – a lawyer and lecturer at the European Institute of Bioethics – “euthanasia is possible, including for psychological reasons, from the age of 12. Parental consent is required until the age of 16”. In 2017, 1% of euthanasia in the Netherlands was due to psychiatric disorders, and one person under the age of 18 was euthanized for this reason. For du Bus, the following question arises: what is “the Netherlands currently providing for physically and mentally abused people?”  At the very least, care seems to have been inadequate or inappropriate. Noa, who was treated in many different establishments, had written in her autobiography about the horrendous hospital stays and involuntary treatment she underwent. As a victim, she recounted that she “felt almost like a criminal,” even though she had “not even stolen a single sweet in her life”.

     

    Furthermore, “what can we do for someone who no longer wants to eat and drink?” du Bus asked. In the name of patient autonomy, should we agree to let a teenage girl die of hunger and thirst? Surely autonomy is part of resignation in the face of illness and reinforces failure to assist a person in danger? “Today,” noted du Bus, “every issue surrounding the question of death is blurred. What benchmarks are there to say when a person is at the end of their life? Where do we draw the line between natural death and sedation, or between suicide and euthanasia?” What real autonomy is there in the face of death when a person is no longer in a fit state to decide for themselves?

     

    Noa’s parents explained that their daughter did not want to die; she simply did not want to suffer any more. “There is a growing belief today that death ends suffering, and especially that it is the only way to relieve suffering,” said du Bus. In a country marked by individualism, what kind of solidarity can we still provide? “We are beings made for relationships. How was this teenage girl viewed?” asked du Bus. Noa’s death must remain a question for everyone: what have we done with the social contract that used to unite the living?

     

    [1] The Guardian: Dutch girl was not ‘legally euthanised’ and died at home

  • In a coma, she woke up just before she was switched off

    In a coma, she woke up just before she was switched off

    The doctors considered that there was no possibility of improvement and her two children, aged 22 and 23, were confronted with the painful obligation of having to choose between “keeping their mother alive in pain” or letting her die. “You have no idea how heartbreaking it was,” explained her 23-year-old son.

     

    Suzanne Desjardins, who is almost 54 and lives in Canada, suffers from pulmonary emphysema. She was admitted to hospital for flu. Because of the degenerative disease she has had for many years, her situation became more complicated. On 23 May, the doctors thought that she would not last the night. In agreement with the family, her children made the decision to stop treatment.

     

    Half an hour before she was due to be switched off, her brother, who was with her, saw her open an eye. He leapt up and shook her: “It was real despair. I didn’t want to lose her. After about ten seconds, it was as though she woke up,” he said. Confused for a few more days, the patient came round completely: “I want to live! I still have a lot to do, I’ve only had half my life”. She is still waiting for the results of an examination before she can leave hospital.

     

    For further reading:

    Woman miraculously wakes up after 27 years in a coma

    “I was floating above my body” – Krystel Cahanin-Caillaud’s account after spending 5 weeks in a coma

    An Englishman wakes from a coma just before the life support machines are switched off

    Journal de Montréal, Antoine Lacroix (07/06/2019) – À 30 minutes d’être débranchée

  • Organ donation: the automatic assumption that follows from presumed consent is contrary to the very principle of donation

    Organ donation: the automatic assumption that follows from presumed consent is contrary to the very principle of donation

    The Swiss bishops are opposed to presumed consent for organ donation. “We are not against organ donation […]. But we do not want it to be automatic,” said Bishop Felix Gmür, president of the Swiss Bishops’ Conference (Conférence des évêques suisses, CES), at a press conference in Bern on Thursday.

     

    A popular initiative entitled Promote Organ Donation – Save Lives to introduce presumed consent in Switzerland has been under consideration since spring. It is intended to “facilitate donations” and “reduce waiting lists”. The bishops oppose this proposal because “a donation presupposes the expressly voluntary nature of being a donor”. Presumed consent “is contrary to the principle of explicit consent by the person concerned”. The bishops believe that organ donation can be considered an act of love, but “that it cannot give rise to any moral obligation. Anyone who does not want to give their organs, tissues or cells can under no circumstances be morally condemned”.

    Tribune de Genève (06/06/2019) – Don d’organes: les évêques rejettent le consentement présumé

  • The United Kingdom: towards laws facilitating surrogacy?

    The United Kingdom: towards laws facilitating surrogacy?

    Au Royaume-Uni, la Law Commission, chargée de conseiller le gouvernement sur les réformes juridiques, vient de rédiger un projet de « Surrogacy pathway », ou solution de GPA. Les lois actuelles régissant la gestation pour autrui au Royaume-Uni datent des années 1980, pour Sir Nicholas Green, président de la Law Commission, elles sont obsolètes et nécessitent d’être remises à jour, pour s’adapter aux besoins des quelques 400 personnes qui commandent des GPA en Angleterre chaque années. « Notre projet ne vise pas à examiner si la maternité de substitution devrait être autorisée. Nous partons du principe que la maternité de substitution est une forme acceptée de construction d’une famille ».

     

    Parmi les propositions adressées aux ministres :

    • Les parents d’intention pourraient obtenir automatiquement les droits parentaux sans avoir besoin de passer devant le juge, à condition que la mère porteuse soit britannique.
    • Les mères porteuses auraient un délai de rétractation possible de 5 semaines.
    • Elles pourraient être rémunérées, au lieu d’être simplement dédommagées de leurs frais.
    • Un organisme de règlementation serait créé, fournissant examens médicaux et conseils juridiques à tous les acteurs du contrat.
    • Le partenaire de la mère porteuse « n’aurait pas son mot à dire sur le contrat de ou sur le sort de l’enfant » parce que, selon la Law Commission, cela enverrait « un message malvenu sur le droit des femmes à disposer de leur corps ».

     

    Si les ministres valident ces recommandations, « cela signifierait que, pour la première fois, quelqu’un pourrait être reconnu comme le parent d’un nouveau-né sans avoir aucun lien biologique avec l’enfant ».

     

    Pour aller plus loin :

    In Britain single people will now be able to become parents through surrogacy

    Daily Mail,  Steve Doughty (06/06/2019) – Couples with surrogate babies could get automatic parental rights without having to apply through the courts under proposed legal reform