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FRANCOISE BAYLIS - Dalhousie University. Halifax, NS, CA

FRANCOISE BAYLIS FRANCOISE BAYLIS

Professor and Canada Research Chair in Bioethics and Philosophy | Dalhousie University

Halifax, NS, CANADA

Dr. Baylis researches matters related to ethics, health law and policy of assisted human reproduction and novel genetic technologies.

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Biography

Françoise Baylis, Professor and Canada Research Chair in Bioethics and Philosophy, focuses on women's health, new genetic technologies, new reproductive technologies and research involving humans. She has particular expertise on the ethics of assisted human reproduction, human embryo research, human enhancement, relational identity, consensus-building and inter-generational justice.

Baylis works at the intersection of policy and practice. Over the years she has participated in a number of policy initiatives nationally and globally. As a public intellectual, she brings theory, ethical sensibilities and common sense to a wide range of public issues.

She is a frequent guest on CBC and Radio Canada. She knows how to speak clearly and forcefully and understands the demands of journalists’ deadlines.

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Françoise Baylis, professeure et titulaire de la Chaire de recherche du Canada en bioéthique et en philosophie, s'intéresse à la santé des femmes, aux nouvelles technologies génétiques, aux nouvelles techniques de reproduction et à la recherche impliquant les humains. Elle possède une expertise particulière sur l'éthique de la procréation humaine assistée, la recherche sur l'embryon humain, l'amélioration de l'être humain, l'identité relationnelle, le dévelopment de consensus et la justice intergénérationnelle.

Baylis travaille à l'intersection de la politique et de la pratique. Au fil des années, elle a participé à un certain nombre d'initiatives stratégiques à l'échelle nationale et mondiale. En tant qu'intellectuelle publique, elle apporte la théorie, la sensibilité éthique et le bon sens à un large éventail de questions publiques.

Elle est fréquemment invitée à CBC et à Radio-Canada. Elle sait parler clairement et avec force et comprend les exigences des délais des journalistes.

Areas of Expertise (11)

Gene Editing Human Enhancement Bioethics Assisted Human Reproduction Genetic Technologies & Ethics Genetics and the Law Policy & Regulation Identity Women's Health Health Law and Ethics Issues Health Policy Research Ethics

Accomplishments (5)

Canadian Bioethics Society Lifetime Achievement Award (professional)

2017-05-26

The CBS Lifetime Achievement Award is given annually to an individual whose demonstrated scholarship and/or leadership has contributed significantly to health care ethics in Canada.

Criteria for selection include:

• A clear focus on health care ethics in his/her lifetime achievements
• National and international profile in health care ethics
• Outstanding leadership in shaping the field of health care ethics in Canada

McNeil Medal from Royal Society of Canada (professional)

2016-09-29

For the public awareness of science.

It is intended to highlight the important role that science plays within our society and to encourage the communication of science to students and the public.

The medal is awarded to a candidate who has demonstrated outstanding ability to promote and communicate science to students and the public within Canada (the term public is defined in its broadest sense).

Appointment to the Order of Canada (professional)

2016-06-30

Dr. Baylis was recognized "for her contributions as a champion of health care ethics in Canada, and for creating forums to discuss current medical ethics issues."

Appointment to the Order of Nova Scotia (professional)

2016-09-16

Baylis is able to take complex issues, such as stem cell research and new reproductive technologies, and make them understandable and assessable to society. She uses film and other media to educate and engage the public without jargon and other barriers created by complex academic subjects. At the heart of Baylis’ work is the belief that citizens belong in the discussion and decision making about scientific advances that affect our lives.

Canadian Association of University Teachers, 2016 Distinguished Academic Award (professional)

2015-11-27

The CAUT Distinguished Academic Award recognizes academics who excel in each of the domains of academic life: teaching, research, service to the institution and to the community. The recipients will be individuals whose teaching, research and service have contributed noticeably to the lives of their students, to their institution, to their field of study, and to the community.

Education (4)

Western University: PhD, Philosophy (specialization Bioethics) 1989

Western University: MA, Philosophy 1984

McGill University: BA (Hons), Political Science 1983

Laurentian University: Certificate of Bilingualism, French/English 1981

Affiliations (3)

  • Canada Research Chair in Bioethics & Philosophy [Tier 1]
  • Fellow of the Royal Society of Canada
  • Fellow of the Canadian Academy of Health Sciences

Languages (2)

  • English
  • French

Media Appearances (9)

Newmarket sperm importer failed safety inspection 3 times

thestar.com  online

2016-11-28

“One of the guiding principles of the Canadian legislation is that ‘trade in the reproductive capabilities of women and men’ should be prohibited. In other words, in Canada we don’t want Canadians to sell their body bits. We understand that this can result in exploitation,” Baylis argues.

[Baylis] would rather see Ottawa do more to encourage Canadian men to donate altruistically by removing disincentives. This could be done, for example, by addressing uncertainties created by outdated family law, which leave donors unsure of whether they will have parental obligations — including financial obligations — to children created from their sperm.

Baylis argues that licensing of the industry would go a long way toward protecting Canadians by giving government more enforcement clout.

It should have been done long ago, she explains, noting that the 2004 Assisted Human Reproduction Act initially included licensing provisions, but much of the legislation was declared unconstitutional in 2010 and repealed two years later.

“One of the clear benefits of a licensing system is that if a company like Outreach Health Services failed to meet health and safety criteria its licence could be revoked. What better way to protect the health and safety of Canadians?” she says.

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Researchers break record for keeping lab-grown human embryos alive

The Guardian  online

2016-05-05

Françoise Baylis, professor and Canada research chair in bioethics and philosophy at Dalhousie University, said that the 14 day rule was always bound to come under pressure from technological advances. “Scientific and political elites have long known the day would come when scientists would challenge the 14-day limit. Indeed, Sir Robert Edwards, one of the pioneers of IVF, suggested that the limit should be 21 days,” she said. “Isn’t it somewhat ironic that when the agreed-upon limit might finally be practically relevant - meaning that it could function to stop scientists from doing something they might otherwise do - the suggestion is that now might be a good time to change the limit?”

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Inside the ‘black box’ of human development

The Guardian  online

2016-06-05

Philosopher Françoise Baylis, a bioethicist at Dalhousie University in Canada, is more scathing: “Isn’t it somewhat ironic that when the agreed upon limit might finally be practically relevant – meaning that it could function to stop scientists from doing something they might otherwise do – the suggestion is that now might be a good time to change the limit?”

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Recherche sur l'embryon: faut-il aller au-delà des 14 jours?

Le Monde  online

2016-05-16

Deux équipes britannique et américaine sont parvenues à cultiver in vitro des embryons humains jusqu’à 14 jours. La philosophe Françoise Baylis s’interroge sur l’opportunité d’autoriser les chercheurs à repousser cette limite.
Les élites scientifiques et politiques savaient depuis longtemps qu’un jour viendrait où les scientifiques contesteraient la limite de 14 jours imposée à la recherche sur l’embryon humain in vitro. En effet, Sir Robert Edwards, l’un des pionniers de la fécondation in vitro (FIV), avait déjà suggéré que cette limite devrait être de 21 jours. Et, au Canada, dès 1995, le Groupe de discussion sur la recherche sur l’embryon, parrainé par le gouvernement (qui a approuvé la norme internationalement acceptée de 14 jours), avait également noté que « cette limite devrait être sujette à modification, s’il apparaissait des raisons éthiques ou scientifiques nouvelles et convaincantes pour le faire ».

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Can genetic discrimination bill protect patients from insurance hikes?

CBC - The Current  radio

2016-09-23

FB: people are genuinely concerned about discrimination, both in terms of insurance and employment, and people are concerned about discrimination more broadly, which is why we're seeing proposed changes to the Human Rights Act.

LL: Do you support the idea of having this law signed into force?

FB: Absolutely. I think it's a very good piece of legislation and I have to say that I'm not persuaded by the kinds of concerns that have been raised by the insurance industry. Let me take one example, the previous speaker made the point right at the outset, that insurance is a contract between parties with equal knowledge. That's just not true. The bottom line is if it truly was that we both had equal knowledge, we wouldn't have the kind of insurance company business that we have right now. Insurance companies have all kinds of experts in actuarial science. They know how to take the data about me, but not only the data about me, the data about lots of people like me. They use that data to come up with probabilities, and then they engage in a betting game with me. I think we really need to rethink what insurance is about. It's a certain kind of gamble. And when I buy insurance, in fact I'm betting against myself. I'm betting that I'm going to die early and if I do, you're going to have to pay out a lot of money to my family. And the insurance company is betting that I'm going to live a very long time, and they're not going to have to pay out any more than what they've already collected from me in terms of premiums. So the way this game works will be radically shifted as the insurance company says, oh no, I want more and more and more information about you. Well, if they ever reach 100 per cent, we're not going to have an insurance industry because there's no more the gamble, the play. Why would I pay you? And the other thing you're going to find is that you'll see a certain kind of cherry picking, which we've already seen in other jurisdictions, for example, around health insurance. Now, health insurance doesn't apply in Canada, but the phenomenon of cherry picking is very important. And that's where basically companies are going to choose really healthy people, so they're never going to have to pay out on anything. And they're going to shy away from contracts with people who represent a real risk.

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Pour un consensus sur la réécriture du génome humain

Fondation Canadienne Pour L'Innovation/Canada Foundation for Innovation  online

2016-02-08

Comme la plupart des technologies, notre capacité de manipuler et de modifier l’ADN gagne en sophistication. Mais pouvoir signifie-t-il devoir? Et surtout, à qui revient la décision?

« Quand on parle de modifier l’espèce, ne devrions-nous pas tous avoir notre mot à dire? », demande l’éthicienne Françoise Baylis, titulaire de la Chaire de recherche du Canada en bioéthique et en philosophie à la Université Dalhousie.

Il y a près d’une décennie, elle s’est servie de financement de la FCI pour créer un espace de recherche interdisciplinaire à Dalhousie University afin de permettre à des professeurs, à des boursiers postdoctoraux et des étudiants des cycles supérieurs de collaborer à l’étude de questions à la jonction des soins de santé, de la bioéthique et des politiques publiques. L’équipe – qui travaille maintenant sous la bannière Impact Ethics – examine divers sujets allant des technologies de procréation assistée aux nouvelles techniques génétiques.

Récemment, la mise au point d’une nouvelle technique, appelée CRISPR/Cas9, a insufflé un sentiment d'urgence dans le dialogue sur la modification génétique. CRISPR/Cas9 utilise une enzyme d'origine bactérienne pour induire des cassures dans l’ADN qui peuvent conduire à l’inactivation ou à l’introduction de gènes à tout point du génome. Par rapport aux techniques précédentes, CRISPR/Cas9 est plus efficace, plus précise et moins coûteuse.

« La modification génétique de l’être humain se présentait auparavant comme une possibilité à un horizon lointain, dit la chercheuse, mais aujourd’hui, cette possibilité paraît bien plus proche. » Certains espèrent que cette technique mènera à des percées dans la lutte contre le cancer ou d’autres maladies à composante génétique. D’autres s’inquiètent de la conception de « bébés à la carte » ou de l’introduction de modifications artificielles dans le patrimoine génétique humain.

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Party for future moms, FYOE (Freeze Your Own Eggs)

Los Angeles Times  online

2015-05-08

Women need to think clearly about "what is it you think you're going to achieve," said Francoise Baylis, a professor of ethics in the medicine faculty at Canada's Dalhousie University. "Is your goal to have a family? Because there are easier ways."

Baylis also questions whether parties are an appropriate place to discuss a medical procedure — Botox parties notwithstanding.

"Do you have a Champagne party to spread the word about a new hypertensive drug?" Baylis asked.

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Breaking the wall between gene science and ethics. How philosophy can provide frameworks for global biotech revolution

Falling Walls  online

2016-11-09

Throughout history, when presented with new technologies, humans as a species have shown a recurring pattern: a tendency to engage in reckless exploitation, often ignoring harmful side effects and hazards, and only much later pausing to consider the need for ethical reflection and direction. At the dawn of a new revolution in biotechnology, accelerated by the discovery of the precise (and cheap) gene-editing method CRISPR/Cas9, we are yet again facing decisions with wide-ranging consequences. While gene-editing technologies promise therapies for a number of serious and deadly diseases, they also open the door to eugenics and enhancements with the potential for irrevocable modifications of the human germ line. Françoise Baylis, a philosopher and professor at Dalhousie University, is one of the foremost voices among bioethics scholars worldwide. Her mission is to foster an inclusive dialogue on what should and should not be allowed through gene editing. As the consequences of these decisions will affect future generations, the ultimate goal is to reach a broad societal consensus on the direction and limits on how and to what extent this technology should be developed – a consensus that needs to include the voices not just of scientists and policymakers, but also of informed and ethically educated citizens. At Falling Walls, Françoise reflects on the immense opportunities and threats posed by next-generation biotechnologies and provides clues on how we, as a species, should deal with them.

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Françoise Baylis : bioéthicienne

TFO  tv

2015-01-01

Dans son bureau de l’Université Dalhousie à Halifax, la bioéthicienne Françoise Baylis doit soupeser le pour et le contre des soi-disant progrès médicaux, pour éterminer si les bénéfices pour la santé d’une personne peuvent nuire aux droits d’une autre…Ces questions, Françoise Baylis se les pose tous les jours.

On vit plus vieux. On vit en meilleure santé. Les progrès de la science sont partout. Des avancées technologiques viennent en aide aux couples qui ont du mal à concevoir un bébé. Mais ces progrès sont-ils réellement positifs pour la société?

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Event Appearances (6)

Falling Walls

Which are the next walls to fall?  Berlin, Germany

2016-11-09

Global Forum on Bioethics in Research

Ethics of research in pregnancy  Buenos Aires, Argentina

2016-11-03

Zika and Beyond

Pregnancy, research and public health emergencies  Buenos Aires, Argentina

2016-11-02

Gairdner 2016

Gene editing: Bacterial immunity to global impact  Toronto, Canada

2016-10-28

Walrus Talks

The art of conversation  Calgary, Canada

2016-10-20

Organisation for Economic Co-operation and Development (OECD)

Workshop on gene editing in an international context: Scientific, economic and social issues across sectors  Ottawa, Canada

2016-09-29

Research Grants (5)

Canada Research Chairholder

Canada Research Chairs - CIHR funded $2,800,000.00

2004-10-01

It’s a paradox that bioethicists are often viewed as either standing in the way of scientific progress or as uncritical cheerleaders for science. This situation has limited the potential contributions of bioethicists to ethical policy-making.

Dr. Françoise Baylis, Canada Research Chair in Bioethics and Philosophy, is developing new strategies that would allow bioethicists to make just and lasting policy contributions. She is testing the impact of these strategies on public policy challenges such as research involving humans, women’s health, public health, pandemic planning, novel technologies and access to health care.

Baylis believes bioethicists need to take on greater advocacy roles and use their talents and expertise in pursuit of social justice. They need to exercise their moral imagination and find creative ways to make the powerful care about matters of fairness. That’s why she is developing strategies for bioethicists that are sensitive to real world policy-making and politics.

Baylis is also developing effective means to engage people whose interests and voices have traditionally been marginalized in policy discussions. She aims to help bioethicists create welcoming places for meaningful ethics discourse beyond select interest groups. Baylis is doing this by exploring the role of bioethicists in creating spaces for deliberation and discussion. In addition, she is conducting a critical review of the ethical strategies used to address past and emerging ethical issues, and is assessing the opportunities and barriers to meaningful participation by Canadians in policy-making.

Baylis’ research will help decision-makers develop and implement ethically sound policies and programs.

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Eggs and embryos for research: A comparative study of assisted human reproduction patients' views about the donation of eggs and embryos for scientific and clinical research

CIHR 

2011-10-03

Throughout history, when presented with new technologies, humans as a species have shown a recurring pattern: a tendency to engage in reckless exploitation, often ignoring harmful side effects and hazards, and only much later pausing to consider the need for ethical reflection and direction. At the dawn of a new revolution in biotechnology, accelerated by the discovery of the precise (and cheap) gene-editing method CRISPR/Cas9, we are yet again facing decisions with wide-ranging consequences. While gene-editing technologies promise therapies for a number of serious and deadly diseases, they also open the door to eugenics and enhancements with the potential for irrevocable modifications of the human germ line. Françoise Baylis, a philosopher and professor at Dalhousie University, is one of the foremost voices among bioethics scholars worldwide. Her mission is to foster an inclusive dialogue on what should and should not be allowed through gene editing. As the consequences of these decisions will affect future generations, the ultimate goal is to reach a broad societal consensus on the direction and limits on how and to what extent this technology should be developed – a consensus that needs to include the voices not just of scientists and policymakers, but also of informed and ethically educated citizens. At Falling Walls, Françoise reflects on the immense opportunities and threats posed by next-generation biotechnologies and provides clues on how we, as a species, should deal with them.

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States of mind: Emerging issues in neuroethics

CIHR $1,376,500

2005-10-01

In 2001, at the close of the decade designated by presidential proclamation as the 'Decade of the Brain', William Safire coined the phrase 'neuroethics' and, from the platform of his column in the New York Times, announced the need for such a discipline. The proposed States of Mind New Emerging Team fits squarely within this 'new' discipline and aims to address ethical issues of identity, free will and harm/benefit analysis. Of particular interest are the ways in which various neurotechnologies challenge our views about the ethics of personality enhancement, our understanding of morally relevant criteria for personhood, our commitment to agency and privacy, our willingness to tolerate or challenge forced psychiatric treatment, and, finally, our understanding of research risks and our obligation to minimize such risks.

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Therapeutic hopes and ethical concerns: Clinical research in the neurosciences

CIHR $472,348

2005-10-01

There is an urgent need for sustained, sound debate on research ethics in the neurosciences. The project Therapeutic hopes and ethical concerns: Clinical research in the neurosciences will contribute to this debate. This research focuses on the ethics of clinical trials in gene transfer and stem cell research for rapidly progressing fatal neurological conditions (taking glioblastoma as an example) and neurodegenerative conditions (taking Parkinson's disease as an example). We will address issues to do with preclinical assessment, research design, the potential impact of gene transfer and stem cell interventions in the brain on issues of personal identity, and consent to brain research. This research aims to influence health research and health policy, with particular attention to Canadian priorities.

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Conceptual and ethical issues at the intersection of genomics, developmental biology, ecology, and health - III

CIHR $98,829

2003-10-01

There is little doubt that the mapping and sequencing of the human genome is a monumental achievement of basic biological science, with broad implications at both individual and social levels. As we enter the 'post-genomic' era, researchers are revising the drafts and beginning to interpret genomics data on a large scale. A central goal of such research efforts is to improve health and cure disease. But there is no simple relationship between a genome sequence and a developed organism. Development results from a wide range of contingent interactions between genes and cells and tissues and environmental factors, and understanding these interactions will require considerable efforts and innovate research design. And even when we do understand them, important ethical questions will remain about how best to use this information to improve human health. I propose to analyze how genomics research may improve the health of Canadians, and to assess the most morally defensible and scientifically responsible ways to fulfil the promises of human genomics. My vantage point is bioethics grounded in the philosophy of biology, which permits both conceptual and ethical attention to emerging issues in post-genomic science and policy.

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Articles (15)

Insurance companies shouldn’t access genetic test results HealthyDebate

2016-09-28

Bill S-201, An Act to prohibit and prevent genetic discrimination, is now before the House of Commons where it has received all-party support and passed second reading. It has been referred to Committee for review and improvements before the third and final reading.

In brief, the Act would stop insurance companies and employers from asking clients to take a genetic test or to share information about genetic tests they may have taken.

In addition, the Act would make it against the Canadian Human Rights Act to discriminate against someone based on “genetic characteristics” – which would make this akin to discriminating against someone based on race, ethnic origin, sex, sexual orientation, or disability.

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Risky business: Genetic discrimination & insurance ImpactEthics.ca

2016-09-26

Bill S-201, An Act to prohibit and prevent genetic discrimination, has received the unanimous support of the Canadian Senate. It is now before the House of Commons where it has received all-party support and passed second reading. It has been referred to Committee for review and improvements before the third and final reading.

In brief, there are three parts to the Act. First, there is a prohibition on “requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods and services.” This would stop companies that sell life, critical illness and disability insurance from asking clients to take a genetic test or to share information about genetic tests they may have taken.

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CRISPR-Cas9 system: Opportunities and concerns Clinical Chemistry

2016-09-01

Currently, a new revolutionary genome-editing tool is opening new avenues for gene engineering. It is known as the clustered regularly interspaced short palindromic repeats (CRISPR)11 and the CRISPR-associated (Cas) 9 system.

In general, the CRISPR-Cas system has been evolved in archaea and bacteria as part of their adaptive immune mechanisms. Mechanistic aspects of the system can be found in the literature. Among the 3 CRISPR-Cas system types that were found in these organisms, the type II system in Streptococcus pyogenes is the most widely applied.

The type II (CRISPR-Cas9) system includes the RNA-guided Cas9 nuclease, which binds to specific DNA sequences (complementary to the RNA-guide sequence) and creates double-stranded breaks on the DNA. The dsDNA breaks can be repaired via homology-directed repair (HDR) or nonhomologous end-joining (NHEJ). Based on this principle, the Cas9 and the guide-RNA were modified in various ways to improve the efficiency and specificity of this system, to expand its potential for different applications. This system can be used for altering specific genetic loci through insertions, deletions, point mutations, and sequence inversions. More recently, the system was modified to act as a genome regulator, by tethering effector domains to the Cas9 or guide-RNA, and as a visualization tool by fusing with marker molecules. This multiplex capacity of engineering CRISPR-Cas9 enabled scientists to apply this system for genome modifications in a variety of organisms, like Arabidopsis, Drosophila, Caenorhabditis elegans, zebrafish, mosquitoes, mice, primates, and humans. Lately, the CRISPR-Cas9 gene editing has been used in human embryos and generated several ethical questions and concerns.

In this Q&A, 5 experts from around the world discuss the capabilities of the CRISPR-Cas9 system in editing genomes and discuss the associated ethical concerns.

The interest for using the CRISPR-Cas9 system to targeted genome editing is rapidly emerging. The efficiency …

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Human-Nonhuman chimera research in Canada ImpactEthics.ca

2016-09-01

Last month, the United States National Institutes of Health (NIH) announced proposed changes to its Guidelines on Human Stem Cell Research to permit the funding of some research involving the creation of human-nonhuman chimeras. Chimeras are beings with cells from two or more genetically distinct organisms and these organisms may or may not be from the same species. Specifically, the plan is to permit NIH funding of research involving the transfer of human stem cells or tissues into nonhuman embryos. The proposed changes would end the current moratorium on such research.

With this announcement, the public was invited to comment on the proposed changes. In response, and in an effort to encourage formal submissions to the NIH, a group of academics working in animal studies published an engaging commentary that can reasonably be read as a call to action by like-minded individuals. In their view, “it is unreasonable for the NIH to end its moratorium on funding human-nonhuman chimera research when so many serious issues clearly remain unaddressed.” They call for further deliberation to “more fully examine the ethical issues and challenges raised by this research.”

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Pushing the 14-day limit on human embryo research ImpactEthics.ca

2016-05-05

Scientific and political elites have long known the day would come when scientists would challenge the 14-day limit on human embryo research. Indeed, Sir Robert Edwards, one of the pioneers of IVF, suggested that the limit should be 21 days. And, in Canada, as far back as 1995, the government-sponsored “Discussion Group on Embryo Research” (which endorsed the internationally accepted norm of 14 days) also noted that “this limit should be subject to modification should there be new and compelling ethical or scientific justification to do so.”

This week, two research teams – one at Rockefeller University in the United States and the other at the University of Cambridge in the United Kingdom – have reported research involving human embryos kept in vitro for 12-14 days. Prior to this there were no reports of human embryos cultured in vitro beyond nine days. This scientific breakthrough has prompted a call to revisit the 14-day limit on human embryo research. But is this technological prowess sufficient to warrant a change in law or policy? That is, do we have “new and compelling ethical or scientific justification” to change the 14-day rule?

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On human gene editing: International Summit Statement by the Organizing Committee Issues in Science and Technology

2016-03-21

Scientific advances in molecular biology over the past 50 years have produced remarkable progress in medicine. Some of these advances have also raised important ethical and societal issues. The scientific community has consistently recognized its responsibility to identify and confront these issues. In these cases, engagement by a range of stakeholders has led to solutions that have made it possible to obtain major benefits for human health while appropriately addressing societal issues. Fundamental research into the ways by which bacteria defend themselves against viruses has recently led to the development of powerful new techniques that make it possible to perform gene editing in living cells, including those of humans, at much higher accuracy and efficiency than ever before possible. These techniques are already in broad use in biomedical research. They may also enable wide-ranging clinical applications in medicine. At the same time, the prospect of human genome editing raises many important scientific, ethical, and societal questions.

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Human gene editing: A global discussion ImpactEthics.ca

2016-02-12

Last December, at the end of the three day International Summit on Human Gene Editing in Washington D.C., the Organizing Committee issued a closing Statement. This statement included four discrete conclusions. As the science and politics continue to evolve, a quick refresher is in order.

First, the Committee formally endorsed basic and preclinical research on any and all human cells, provided this was done in accordance with “appropriate legal and ethical rules and oversight.” This would include lab research on somatic cells (i.e., body cells whose genomes are not transmitted to subsequent generations) as well as research on eggs, sperm and human embryos (i.e., germ cells whose genomes are transmitted to subsequent generations if they are used in reproduction).

This conclusion demonstrated approval for past and forthcoming gene editing research involving human embryos. Accordingly, the experiment involving the editing of human embryos published in April 2015 by a group of Chinese scientists would be considered “legitimate.” This is not a comment on the ethics or the science of the research. This is merely to say that the research in non-viable human embryos using CRISPR-Cas9 technology to “repair” the HBB gene that can cause beta-thalassemia was done in accordance with applicable rules in China (and, for that matter, applicable rules in a number of other countries). Similarly, the research approved in February 2016 by the Human Fertilisation & Embryology Authority in the United Kingdom, to better understand the basic biology of human development, would also be considered “legitimate.” In both cases this is because the embryo “editing” research remains in the lab (i.e., there is no plan to initiate a pregnancy) and as such there is no germline effect.

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Mitochondrial replacement techniques: ethical, social and policy considerations Royal Society of Canada/La Scoiété royale du Canada

2016-02-04

Mitochondrial Replacement Techniques: Ethical, Social and Policy Considerations - A Canadian Perspective
On February 3, 2016, the United States National Academies of Sciences, Engineering, and Medicine released its long awaited report, “Mitochondrial Replacement Techniques: Ethical, Social and Policy Considerations”. The committee included among its members, Jonathan Kimmelman, Associate Professor in Biomedical Ethics at McGill University. The technology that is the focus of this report involves the transfer of nuclear DNA from an unfertilized or a fertilized egg with dysfunctional mitochondrial DNA (mtDNA) into a fertilized or unfertilized egg that has healthy mtDNA and has had its nuclear DNA (nDNA) removed.
While some refer to this technology as “germline gene replacement”, “nuclear genome transfer techniques” and “nuclear genome transplantation”, others would prefer not to draw attention to the downstream ethical and social issues related to germline genetic modification and human cloning. For this reason, they have a marked preference for one or other of the following increasingly popular euphemisms: “mitochondrial replacement techniques”, mitochondrial manipulation”, and “mitochondrial donation”. To be clear, the terms “nuclear genome transfer” and “mitochondrial replacement” describe one and the same techne.
Call it what you will, there are two central ethically contentious issues associated with this technology: (i) the fact that children born of this technology will have three genetic parents, insofar as they will have genetic material for a male sperm provider and two female egg providers; and (ii) the possibility that this genetic modification will be passed on to subsequent generations should female children born of this technology reproduce.

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Human embryos and eggs: From long-term storage to biobanking Monash Bioethics Review

2015-12-23

Genetic relatedness poses significant challenges to traditional practices of medical ethics as concerns the biobanking of human biological samples. In this paper, we first outline the ethical challenges to informed consent and confidentiality as these apply to human biobanks, irrespective of the type of tissue being stored. We argue that the shared nature of genetic information has clear implications for informed consent, and the identifying nature of biological samples and information has clear implications for promises of confidentiality. Next, with regard to the special case of biobanking human embryos and eggs, we consider issues arising from: first, the type of tissues being stored; second, the use to which these tissues are put; and third, how this plays out given the shared and identifying nature of these tissues. Specifically, we examine the differences between human bodily tissues and human reproductive tissues focusing on the assumed potential of the reproductive tissues and on the possible greater emotional attachment to these tissues because of their real and imagined kinship. For some donors there may be a sense of family connection with embryos and eggs they once thought of as ‘children-in-waiting’. Finally, we conclude by considering the implications for ethical practice.

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The ethics of creating children with three genetic parents Reproductive BioMedicine Online

2013-06-01

This article on mitochondrial replacement technology briefly explains and defends the legitimacy of such terms as ‘three-parent embryos’, ‘three-parent babies’ and ‘three-person IVF’. Next, it reviews select ethical objections to mitochondrial replacement technology that fall into four, sometimes overlapping, categories: (i) harms to egg providers; (ii) harms to potential offspring and future generations; (iii) harms to specific interest groups; and (iv) harms to society. Taken together, these ethical objections are cause for serious concern and yet the development and future use of mitochondrial replacement technology is likely inevitable.

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Transnational trade in human eggs: Law, policy, and (in)action in Canada Journal of Law, Medicine and Ethics

2013-03-01

In this paper, we provide as accurate a picture as possible of transnational trade in human eggs involving Canadians. We explain the legal status in Canada, and call for reform in the regulation, of such trade.

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"I am who I am": On the perceived threats to personal identity from deep brain stimulation Neuroethics

2013-01-01

This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially true. The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease.

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The inevitability of genetic enhancement technologies Bioethics

2004-01-20

We outline a number of ethical objections to genetic technologies aimed at enhancing human capacities and traits. We then argue that, despite the persuasiveness of some of these objections, they are insufficient to stop the development and use of genetic enhancement technologies. We contend that the inevitability of the technologies results from a particular guiding worldview of humans as masters of the human evolutionary future, and conclude that recognising this worldview points to new directions for ethical thinking about genetic enhancement technologies.

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Crossing species boundaries American Journal of Bioethics

2003-06-21

This paper critically examines the biology of species identity and the morality of crossing species boundaries in the context of emerging research that involves combining human and nonhuman animals at the genetic or cellular level. We begin with the notion of species identity, particularly focusing on the ostensible fixity of species boundaries, and we explore the general biological and philosophical problem of defining species. Against this backdrop, we survey and criticize earlier attempts to forbid crossing species boundaries in the creation of novel beings. We do not attempt to establish the immorality of crossing species boundaries, but we conclude with some thoughts about such crossings, alluding to the notion of moral confusion regarding social and ethical obligations to novel interspecies beings.

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Black as me: Narrative identity Developing World Bioethics

2003-12-01

This commentary responds to genetic testing of African ancestry through a series of personal narratives that reveal a complex, intimate, and individualised process of identity formation. The author discusses both how her family and others outside her family have fostered and challenged her sense of black identity. She concludes by maintaining that racial identity is not in the genes but in the world in which we live and the stories we construct and are able to maintain.

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