Sano Genetics’ Post

There is good reason for us not to allow for heritable human genome editing (HHGE) given where we are with the science and its technological applications. It is not ready, and many of the safety concerns experts have raised remain unanswered. There are many indications from tests on animals that HHGE is still unsafe, leads to unintended consequences, and can have off-target effects among other things. We don't have a clear understanding of how these interventions work. Those are strong reasons to hold off on any clinical applications. Even if all of those kinds of technical problems were resolved, there are still the ethical problems of this being a form of eugenics.

Governing with public engagement: an anticipatory approach to human genome editing Dorit Barlevy et al., (2024). Science and Public Policy, scae010, https://lnkd.in/eXp-35DS Abstract: In response to calls for public engagement on human genome editing (HGE), which intensified after the 2018 He Jiankui scandal that resulted in the implantation of genetically modified embryos, we detail an anticipatory approach to the governance of HGE. By soliciting multidisciplinary experts’ input on the drivers and uncertainties of HGE development, we developed a set of plausible future scenarios to ascertain publics values—specifically, their hopes and concerns regarding the novel technology and its applications. In turn, we gathered a subset of multidisciplinary experts to propose governance recommendations for HGE that incorporate identified publics’ values. These recommendations include: (1) continued participatory public engagement; (2) international harmonization and transparency of multiple governance levers such as professional and scientific societies, funders, and regulators; and (3) development of a formal whistleblower framework.

King Faisal Specialist Hospital and Research Center (KFSHRC) hosted the third Masterclass in Clinical Laboratory Genetics and Genetic Counselling, focusing on advancing genomic medicine and ethical practices aligned with Saudi Arabia’s legal principles. Bringing together 170 experts and 28 speakers from leading institutions, the event featured discussions on integrating genomic technologies into patient care and navigating ethical and legal dimensions in perinatal genetics. https://lnkd.in/dFUazwXK #genetics #geneticcounseling #genomic

South Africa’s recently updated Ethics in Health Research Guidelines have sparked global discussions. While some fear they green-light heritable human genome editing, the reality is more nuanced. 🔗 Learn more about the future of genome editing and ethics in South Africa. #GenomeEditing #EthicsInScience #SouthAfrica #Bioethics #GeneticResearch #PublicHealth #GlobalDebate https://lnkd.in/gmFuU65j

Explore the ethical maze of gene editing and CRISPR's potential to cure diseases and enhance human traits. How do we balance innovation with ethics? #GeneEditing #Bioethics #CRISPR #FutureOfMedicine #EthicalScience https://lnkd.in/d4R8sAdZ

🚨 Will South Africa Lead the Way in Human Genome Editing? 🚨 I'm genuinely shocked by this development: South Africa’s updated research ethics guidelines now include a section on heritable human genome editing. Could South Africa actually become the first country to allow this controversial practice? I’m curious to hear what geneticists in this country thinks about this: Is this a groundbreaking opportunity or a risk we’re not yet ready to take? #GenomeEditing #Bioethics #SouthAfrica #CRISPR #FutureOfScience https://lnkd.in/dHN8RG6S.

Explore the ethical maze of gene editing and CRISPR's potential to cure diseases and enhance human traits. How do we balance innovation with ethics? #GeneEditing #Bioethics #CRISPR #FutureOfMedicine #EthicalScience https://lnkd.in/d6TMvPPg

Is heritable human genome editing legal in South Africa? Some people certainly seem to think so - but most scholars in South Africa disagree. A recent article in The Conversation Canada by authors Francoise Baylis and Katie Hasson has sparked an international outcry. The issue at hand is the 2024 revision of the National Health Research Ethics Guidelines, in which language is used that would suggest that persons could be 'born as a result of heritable human genome editing interventions'. Of course, NHREC guidelines are just that - guidelines - and need to be understood in connection with existing legislation. Today, members of the EthicsLab posted two blogposts relating to this issue. In the first, EthicsLab Director Jantina De Vries explains what she sees as the crux of the current controversy - and calls for broad societal debate to ensure that any developments surrounding heritable human genome editing in the country, are grounded in care, justice and the collective good. In the second, Dr Anye-Nkwenti Nyamnjoh critiques the instrumental invocation of Ubuntu philosophy in this debate, without recognising it as a dynamic and evolving concept and practice. https://lnkd.in/d4GWr2jF https://lnkd.in/dX_fqAhn

  Are you a junior scholar working in pediatric research ethics, gene therapy ethics, or clinical trial ethics? Would you like to share your work, hear what other junior scholars in the space are working on, and learn how to advance your career? Join  virtually on November 6th, 2024 for the Early Career Scholars Meeting, presented by the NYU Grossman School of Medicine Division of Medical Ethics Working Group on Pediatric Gene Therapy & Medical Ethics (PGTME). Juniors scholars at all levels of academia are welcome, and registration is FREE! The Early Career Scholars Meeting will feature an introduction from PGTME co-chair Dr. Alison Bateman-House, flash presentations from your fellow junior scholars, keynote presentations from senior experts in the space, and an open forum to connect with other attendees. Abstracts - Want to share your work in a 10-minute virtual flash presentation at the meeting? Submit an abstract to go along with your registration!  Abstracts can come from in-progress work, completed projects, or early ideas for future work, as long as they are your own original work in the fields of pediatric research ethics, gene therapy ethics, or clinical trial ethics, broadly construed. Those selected for flash presentations will be notified October 25th, 2024. **Abstract submission is not required for registration, although it is encouraged!** FREE REGISTRATION, ABSTRACT SUBMISSION, AND MORE INFO HERE:https://lnkd.in/eWzdQ_8c

Will South Africa become first country to accept controversial form of human genome editing? South Africa's recent update to include #heritable human genome editing in its research ethics guidelines has sparked global debate. Should nations allow genetic modifications that can be inherited? The implications of this controversial technique and its potential impact on future generations is still its embryonic stage. What should be the ethical boundaries of science and the responsibility that comes with groundbreaking research? https://lnkd.in/dDA_wT2C What are your thoughts on this significant step in genetic research and ethics? Saheed Olaide Jimoh, Ph.D. Benjamin Karikari, Ph.D Victoria Anthony Uyanga Funmilayo Doherty Ph.D. Frederick Sossah Njongenhle Nyoni, PhD John Brunnquell, Ph.D. Mahmoud Magdy Elmosallamy Abel Wend-Soo Zongo, PhD Daniel Zogona, Ph.D. Peter A. Daniel B. Schwab, PhD Dougbeh Chris Nyan, M.D.Ravichandra Mondreti, Ph.D. Idowu Aneyo (PhD) Funmilayo Egunjobi Dr. Ishan Pandey, Ph.D., MASM, MMS, MACS Ibrahim Yahaya Wuni, PhD Lois A.O. Damptey, PhD Agyemang Danquah #GenomeEditing #EthicsInScience #SouthAfrica #ResearchEthics