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Vardit Ravitsky is Full Professor at the Bioethics Program, School of Public Health, University of Montreal. She is P... moreVardit Ravitsky is Full Professor at the Bioethics Program, School of Public Health, University of Montreal. She is President of the International Association of Bioethics and Director of Ethics and Health at the Center for Research on Ethics. She is a 2020 Trudeau Foundation Fellow and Chair of the Foundation’s COVID-19 Impact Committee, as well as Fellow of the Canadian Academy of Health Sciences. She is member of the Standing Committee on Ethics of the Canadian Institutes of Health Research (CIHR) and of the Institute Advisory Board of CIHR’s Institute of Genetics. She is also member of the National Human Genome Research Institute’s (NHGRI) Genomics & Society Working Group. Her research focuses on the ethics of genomics and reproduction and is funded by Canada’s leading funding agencies. She published over 160 articles and commentaries on bioethical issues.
Ravitsky's research covers a variety of topics such as: public funding of In-Vitro Fertilization (IVF); the use of surplus frozen embryos; posthumous reproduction; pre-implantation genetic diagnosis (PGD); gamete donation; epigenetics; prenatal testing, in particular the ethical, social and legal aspects of Non-Invasive Prenatal Testing (NIPT); germline and somatic gene editing; and mitochondrial replacement. She holds a BA from the Sorbonne University in Paris, an MA from the University of New Mexico in the US, and a PhD from Bar-Ilan University in Israel. Previously, she was faculty at the Department of Medical Ethics, School of Medicine, at the University of Pennsylvania. She was also a Senior Policy Advisor at CIHR's Ethics Office and a GE3LS consultant to Genome Canada (GE3LS = genomics and its ethical, economic, environmental, legal and social implications). edit
The Center for Bioethics at the University of Pennsylvania is the internationally recognized leader in bioethical education and research. Its interdisciplinary faculty is drawn from the fields of medicine, law, nursing, education,... more
The Center for Bioethics at the University of Pennsylvania is the internationally recognized leader in bioethical education and research. Its interdisciplinary faculty is drawn from the fields of medicine, law, nursing, education, philosophy, psychology, and religious studies. Arthur L. Caplan, the Center's founding director, is recognized as one of the most influential experts in bioethics. He has authored numerous books and articles, and served as the Chair of the Advisory Committee to the United Nations on human cloning.
The Penn Center's leading fellows, Autumn Fiester and Vardit Ravitsky, have combined their expertise with Dr. Caplan and over 80 other contributors to create The Penn Center Guide to Bioethics--the foremost authority on both traditional and cutting-edge bioethical issues. The Penn Guide navigates uncharted ethical terrains, undoubtedly shaping both academic and public discourses on the challenging controversies generated by new technologies, theories, and medical advances.
This volume represents the Penn Center's distinct, pioneering approach to bioethics, one that emphasizes empirical treatment of bioethical issues, and the integration of bioethical scholarship with practical application.
Learn what the Penn Center has to say about:
Neuroethics and brain imaging: Is my mind mine?
Choosing future people: reproductive technologies and identity
Eugenics and survival of the fittest in the modern world
Bioethics and national security
Vaccination, abortion, nanotechnology, organ transplantation, end-of-life issues, and more.
The Penn Guide will be the definitive text for policy makers, health practitioners, researchers, and students. This book will also inform the general public, patients, and family members as they seek answers to the bioethical issues of the day.
The Penn Center's leading fellows, Autumn Fiester and Vardit Ravitsky, have combined their expertise with Dr. Caplan and over 80 other contributors to create The Penn Center Guide to Bioethics--the foremost authority on both traditional and cutting-edge bioethical issues. The Penn Guide navigates uncharted ethical terrains, undoubtedly shaping both academic and public discourses on the challenging controversies generated by new technologies, theories, and medical advances.
This volume represents the Penn Center's distinct, pioneering approach to bioethics, one that emphasizes empirical treatment of bioethical issues, and the integration of bioethical scholarship with practical application.
Learn what the Penn Center has to say about:
Neuroethics and brain imaging: Is my mind mine?
Choosing future people: reproductive technologies and identity
Eugenics and survival of the fittest in the modern world
Bioethics and national security
Vaccination, abortion, nanotechnology, organ transplantation, end-of-life issues, and more.
The Penn Guide will be the definitive text for policy makers, health practitioners, researchers, and students. This book will also inform the general public, patients, and family members as they seek answers to the bioethical issues of the day.
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Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the... more
Non-invasive prenatal testing (NIPT) is an exciting technology with the potential to provide a variety of clinical benefits, including a reduction in miscarriages, via a decline in invasive testing. However, there is also concern that the economic and near-future clinical benefits of NIPT have been overstated and the potential limitations and harms underplayed. NIPT, therefore, presents an opportunity to explore the ways in which a range of social pressures and policies can influence the translation, implementation, and use of a health care innovation. NIPT is often framed as a potential first tier screen that should be offered to all pregnant women, despite concerns over cost-effectiveness. Multiple forces have contributed to a problematic translational environment in Canada, creating pressure towards first tier implementation. Governments have contributed to commercialization pressure by framing the publicly funded research sector as a potential engine of economic growth. Members of industry have an incentive to frame clinical value as beneficial to the broadest possible cohort in order to maximize market size. Many studies of NIPT were directly funded and performed by private industry in laboratories lacking strong independent oversight. Physicians' fear of potential liability for failing to recommend NIPT may further drive widespread uptake. Broad social endorsement, when combined with these translation pressures, could result in the " routinization " of NIPT, thereby adversely affecting women's reproductive autonomy. Policymakers should demand robust independent evidence of clinical and public health utility relevant to their respective jurisdictions before making decisions regarding public funding for NIPT.
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The 'Stakeholder Perspectives on Noninvasive Prenatal Genetic Screening' Symposium was held in conjunction with the 2015 annual meeting of the International Society for Prenatal Diagnosis. During the day-long meeting, a panel of patient... more
The 'Stakeholder Perspectives on Noninvasive Prenatal Genetic Screening' Symposium was held in conjunction with the 2015 annual meeting of the International Society for Prenatal Diagnosis. During the day-long meeting, a panel of patient advocacy group (PAG) representatives discussed concerns and challenges raised by prenatal screening, which has resulted in larger demands upon PAGs from concerned patients receiving prenatal cfDNA screening results. Prominent concerns included confusion about the accuracy of cfDNA screening and a lack of patient education resources about genetic conditions included in cfDNA screens. Some of the challenges faced by PAGs included funding limitations, lack of consistently implemented standards of care and oversight, diverse perspectives among PAGs and questions about neutrality, and lack of access to training and genetic counselors. PAG representatives also put forward suggestions for addressing these challenges, including improving educational and PAG funding and increasing collaboration between PAGs and the medical community.
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Between usage and polemic, an argument in favour of clarifying the terminology for preimplantation genetic diagnosis Over 30 years ago, preimplantation genetic diagnosis (PGD) was developed to help couples at risk of transmitting a... more
Between usage and polemic, an argument in favour of clarifying the terminology for preimplantation genetic diagnosis
Over 30 years ago, preimplantation genetic diagnosis (PGD) was developed to help couples at risk of transmitting a serious genetic disease to their offspring. Today, the range of medical and non-medical uses of PGD has expanded considerably and some raise much controversy. This is the case, for example, with In-Vitro Fertilization to select embryos as ‘saviour siblings’ or to screen for susceptibility and predisposition to late onset diseases or conditions of variable penetrance. The situation is even more problematic in the case of sex selection or selection of traits that are culturally valued or discredited (such as deafness, behavioral traits, or height). The debate surrounding PGD has been employing terms to describe these particular uses that have contributed to a focus on the negative effects, thus preventing a distinction between the abuses and the benefits of this reproductive technology. In this context, this paper proposes a terminological clarification that would allow distinguishing medical and non-medical use and, therefore, the issues relevant to each. A more accurate and less generic nomenclature could prevent a conflation of different levels of ethical, clinical and social issues under the single term ‘PGD’. For the vast majority of medical uses, we propose to keep: ‘preimplantation genetic diagnosis (PGD)’, which emphasizes that it is a genetic diagnosis. For non-medical uses, we suggest: ‘preimplantation genetic trait selection (PGTS)’.
Over 30 years ago, preimplantation genetic diagnosis (PGD) was developed to help couples at risk of transmitting a serious genetic disease to their offspring. Today, the range of medical and non-medical uses of PGD has expanded considerably and some raise much controversy. This is the case, for example, with In-Vitro Fertilization to select embryos as ‘saviour siblings’ or to screen for susceptibility and predisposition to late onset diseases or conditions of variable penetrance. The situation is even more problematic in the case of sex selection or selection of traits that are culturally valued or discredited (such as deafness, behavioral traits, or height). The debate surrounding PGD has been employing terms to describe these particular uses that have contributed to a focus on the negative effects, thus preventing a distinction between the abuses and the benefits of this reproductive technology. In this context, this paper proposes a terminological clarification that would allow distinguishing medical and non-medical use and, therefore, the issues relevant to each. A more accurate and less generic nomenclature could prevent a conflation of different levels of ethical, clinical and social issues under the single term ‘PGD’. For the vast majority of medical uses, we propose to keep: ‘preimplantation genetic diagnosis (PGD)’, which emphasizes that it is a genetic diagnosis. For non-medical uses, we suggest: ‘preimplantation genetic trait selection (PGTS)’.
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Purpose: Due to improved survival rates of adolescent cancers, increasing attention is paid to addressing patients' future quality of life after treatment. A salient quality of life issue for adolescent survivors is reproductive capacity.... more
Purpose: Due to improved survival rates of adolescent cancers, increasing attention is paid to addressing patients' future quality of life after treatment. A salient quality of life issue for adolescent survivors is reproductive capacity. Discussing oncofertility, that is, cancer treatment's possible effects on fertility and fertility preservation (FP) options, is a means to address this concern by informing patients and parents regarding options available to them to prevent future struggles with infertility. This systematic literature review aggregates and summarizes the attitudes, beliefs, and patterns of behavior of all stakeholders (i.e., patients, parents, and healthcare providers) in oncofertility discussions when the patient is an adolescent (12–17 years old). Methods: English, French, and German literature was systematically identified according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, via four databases, using several combinations of search terms. Book chapters, dissertations, and peer-reviewed qualitative and quantitative studies are included in this review. Results: Adolescents and parents have similar informational and counseling needs. Both seek to be fully informed about cancer treatment's effects on fertility and FP options. Adolescents have varying experiences of oncofertility discussions and decision making due to sex and/or age differences. Parents and healthcare professionals alike sometimes underestimate the importance of fertility for adolescent cancer patients. Healthcare professionals hold various beliefs and practices with respect to adolescent oncofertility discussions. Many are cognizant of the various barriers that impede successful discussion and strive to overcome them. Conclusion: In order to overcome discussion barriers and meet adolescent patients and their parents' infor-mational needs, it is essential to create and implement practice guidelines, as well as properly educate and train healthcare professionals about oncofertility issues.
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Over the past decade, epigenetic studies have been providing further evidence of the molecular interplay between gene expression and its health outcomes on one hand, and the physical and social environments in which individuals are... more
Over the past decade, epigenetic studies have been providing further evidence of the molecular interplay between gene expression and its health outcomes on one hand, and the physical and social environments in which individuals are conceived, born and live on the other. As knowledge of epigenetic programming expands, a growing body of literature in social sciences and humanities is exploring the implications of this new field of study for contemporary societies. Epigenetics has been mobilised to support political claims, for instance, with regard to collective obligations to address socio-environmental determinants of health. The idea of a moral 'epigenetic responsibility' has been proposed, meaning that individuals and/or governments should be accountable for the epigenetic programming of children and/or citizens. However, these discussions have largely overlooked important biological nuances and ambiguities inherent in the field of epigenetics. In this paper, we argue that the identification and assignment of moral epigenetic responsibilities should reflect the rich diversity and complexity of epigenetic mechanisms, and not rely solely on a gross comparison between epigenetics and genetics. More specifically, we explore how further investigation of the ambiguous notions of epigenetic normality and epigenetic plasticity should play a role in shaping this emerging debate.
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Genomics-based non-invasive prenatal screening using cell-free DNA (cfDNA screening) was proposed to reduce the number of invasive procedures in current prenatal diagnosis for fetal aneuploidies. We review here the clinical and ethical... more
Genomics-based non-invasive prenatal screening using cell-free DNA (cfDNA screening) was proposed to reduce the number of invasive procedures in current prenatal diagnosis for fetal aneuploidies. We review here the clinical and ethical issues of cfDNA screening. To date, it is not clear how cfDNA screening is going to impact the performances of clinical prenatal diagnosis and how it could be incorporated in real life. The direct marketing to users may have facilitated the early introduction of cfDNA screening into clinical practice despite limited evidence-based independent research data supporting this rapid shift. There is a need to address the most important ethical, legal, and social issues before its implementation in a mass setting. Its introduction might worsen current tendencies to neglect the reproductive autonomy of pregnant women.
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Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content... more
Non-invasive prenatal testing (NIPT) is an emerging technology for detecting chromosomal disorders in the fetus and mass media may have an impact on shaping the public understanding of its promise and challenges. We conducted a content analysis of 173 news reports to examine how NIPT was portrayed in English-language media sources between January 1 and December 31, 2013. Our analysis has shown that media emphasized the benefits and readiness of the technology, while overlooking uncertainty associated with its clinical use. Ethical concerns were rarely addressed in the news stories, which points to an important dimension missing in the media discourse. Abstract Health communication; Representations of science and technology Keywords Context The years since the discovery of cell-free fetal DNA (cffDNA)
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This paper presents the current clinical status of Non-Invasive Prenatal Testing (NIPT) and its implementation. It presents key points from guidelines currently provided by professional societies. It then discusses key ethical, social and... more
This paper presents the current clinical status of Non-Invasive Prenatal Testing (NIPT) and its implementation. It presents key points from guidelines currently provided by professional societies. It then discusses key ethical, social and legal
implications of NIPT and raises questions that the Nuffield Council may wish to consider to promote an ethically sound and socially responsible future implementation.
implications of NIPT and raises questions that the Nuffield Council may wish to consider to promote an ethically sound and socially responsible future implementation.
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Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has recently entered clinical practice in many countries, including Canada. This test can be performed early during pregnancy to detect Down... more
Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has recently entered clinical practice in many countries, including Canada. This test can be performed early during pregnancy to detect Down syndrome and other conditions. While NIPT promises numerous benefits, it also has challenging ethical, legal and social implications (ELSI). This paper reviews concerns currently found in the literature on the ELSI of NIPT. We make four observations. First, NIPT seems to exacerbate some of the already existing concerns raised by other prenatal tests (amniocentesis and maternal serum screening) such as threats to women's reproductive autonomy and the potential for discrimination and stigmatization of disabled individuals and their families. This may be due to the likely upcoming large scale implementation and routinization of NIPT. Second, the distinction between NIPT as a screening test (as it is currently recommended) and as a diagnostic test (potentially in the future), has certain implications for the ELSI discussion. Third, we observed a progressive shift in the literature from initially including mostly conceptual analysis to an increasing number of empirical studies. This demonstrates the contribution of empirical bioethics approaches as the technology is being implemented into clinical use. Finally, we noted an increasing interest in equity and justice concerns regarding access to NIPT as it becomes more widely implemented. Mots clés Keywords test prénatal non-invasif (TPNI), enjeux éthiques, légaux et sociaux (ELS), autonomie reproductive, consentement éclairé, interruption de grossesse, discrimination, attitudes eugéniques, implantation du TPNI non-invasive prenatal testing (NIPT), ethical legal and social issues (ELSI), reproductive autonomy, informed
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Target Article
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Assisted reproduction
Preimplantation genetic diagnosis PGD
Prenatal genetic testing
Non-invasive prenatal testing NIPT
Reproductive choice
Switzerland
Preimplantation genetic diagnosis PGD
Prenatal genetic testing
Non-invasive prenatal testing NIPT
Reproductive choice
Switzerland
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Doctors, given the requirements of their profession, have important work-family balance challenges. Measures supporting work-life balance would be beneficial for all physicians (especially for women), their children and their patients.
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Noninvasive prenatal testing (NIPT), a new technology that uses cell-free fetal DNA in maternal plasma to detect fetal aneuploidies, is currently entering clinical practice. NIPT offers great clinical benefits as it is much more accurate... more
Noninvasive prenatal testing (NIPT), a new technology that uses cell-free fetal DNA in maternal plasma to detect fetal aneuploidies, is currently entering clinical practice. NIPT offers great clinical benefits as it is much more accurate than current
screening, allows earlier testing, and eliminates the risk of miscarriage associated with amniocentesis and chorionic villus
sampling (CVS). In the future, it may become accurate enough to replace invasive testing. To date, no attention has been given
in the literature to the role that earlier testing through NIPT might play in the context of religious traditions with particular
attitudes toward abortion, such as in Muslim communities. This article presents some Islamic views regarding fetal
development and abortion as well as some recent legislative developments surrounding abortion for fetal conditions, focusing
on Iran and Saudi Arabia. It then offers a discussion of possible implications of NIPT for Muslim communities, such as its
potential to allow access to diagnostic information before “ensoulment,” the point of fetal development at which the fetus is
bestowed the moral status of a human being. The possible impact of early access to information on the evolution of legislation
surrounding abortion for fetal conditions is also discussed. Finally, we suggest future research directions based on empirical
studies with women, partners, health professionals, and religious authorities in Muslim countries and in countries with a
Muslim majority in order to explore their preferences and attitudes regarding the future implementation of NIPT within those
communities.
screening, allows earlier testing, and eliminates the risk of miscarriage associated with amniocentesis and chorionic villus
sampling (CVS). In the future, it may become accurate enough to replace invasive testing. To date, no attention has been given
in the literature to the role that earlier testing through NIPT might play in the context of religious traditions with particular
attitudes toward abortion, such as in Muslim communities. This article presents some Islamic views regarding fetal
development and abortion as well as some recent legislative developments surrounding abortion for fetal conditions, focusing
on Iran and Saudi Arabia. It then offers a discussion of possible implications of NIPT for Muslim communities, such as its
potential to allow access to diagnostic information before “ensoulment,” the point of fetal development at which the fetus is
bestowed the moral status of a human being. The possible impact of early access to information on the evolution of legislation
surrounding abortion for fetal conditions is also discussed. Finally, we suggest future research directions based on empirical
studies with women, partners, health professionals, and religious authorities in Muslim countries and in countries with a
Muslim majority in order to explore their preferences and attitudes regarding the future implementation of NIPT within those
communities.
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Current prenatal diagnosis for fetal aneuploidies (including trisomy 21 [T21]) generally relies on an initial biochemical serum-based noninvasive prenatal testing (NIPT) after which women who are deemed to be at high risk are offered an... more
Current prenatal diagnosis for fetal aneuploidies (including trisomy 21 [T21]) generally relies on an initial biochemical serum-based noninvasive prenatal testing (NIPT) after which women who are deemed to be at high risk are offered an invasive confirmatory test (amniocentesis or chorionic villi sampling for a fetal karyotype), which is associated with a risk of fetal miscarriage. Recently, genomics-based NIPT (gNIPT) was proposed for the analysis of fetal genomic DNA circulating in maternal blood. The diffusion of this technology in routine prenatal care could be a major breakthrough in prenatal diagnosis, since initial research studies suggest that this novel approach could be very effective and could reduce substantially the number of invasive procedures. However, the limitations of gNIPT may be underappreciated. In this review, we examine currently published literature on gNIPT to highlight advantages and limitations. At this time, the performance of gNIPT is relatively well-documented only in high-risk pregnancies for T21 and trisomy 18. This additional screening test may be an option for women classified as high-risk of aneuploidy who wish to avoid invasive diagnostic tests, but it is crucial that providers carefully counsel patients about the test’s advantages and limitations. The gNIPT is currently not recommended as a first-tier prenatal screening test for T21. Since gNIPT is not considered as a diagnostic test, a positive gNIPT result should always be confirmed by an invasive test, such as amniocentesis or chorionic villus sampling. Validation studies are needed to optimally introduce this technology into the existing routine workflow of prenatal care.
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Objective: To report results of analysis of in vitro fertilization (IVF) users' choices regarding the potential use of their surplus cryopreserved embryos for posthumous assisted reproduction (PAR). Design: Examination of signed consent... more
Objective: To report results of analysis of in vitro fertilization (IVF) users' choices regarding the potential use of their surplus cryopreserved embryos for posthumous assisted reproduction (PAR).
Design: Examination of signed consent forms.
Setting: Public IVF clinic.
Patient(s): A total of 498 individuals who had signed consent forms for cryopreservation of surplus embryos.
Intervention(s): Content analysis of consent form.
Main Outcome Measure(s): Agreement to PAR; importance of appropriate counseling within the consent process.
Result(s): Approximately 68% of individuals consented to the use of surplus embryos for embryologist training and improvement of assisted reproductive techniques, and 56% consented to the use of surplus embryos in a research project; 73.5% of men and 61.8% of women agreed to leave their cryopreserved embryos to their partners for reproductive use in the event of their death.
Conclusion(s): Our results demonstrate that a majority of both men and women agree to leave their frozen embryos to their partners for PAR in a ‘‘real life’’ context, i.e., in which they were required to provide consent for this prospective option. PAR involves complex issues, including the psychologic aspects of initiating a pregnancy while mourning the loss of a loved one or the effect on the prospective child. We argue that in light of the acceptability of PAR—as demonstrated by our results—further
research is required regarding how to best counsel and inform IVF users about the choices they are making in this context, to ensure that their consent for PAR is in fact well informed. (Fertil
Steril 2014;102:1410–5. 2014 by American Society for Reproductive Medicine.)
Design: Examination of signed consent forms.
Setting: Public IVF clinic.
Patient(s): A total of 498 individuals who had signed consent forms for cryopreservation of surplus embryos.
Intervention(s): Content analysis of consent form.
Main Outcome Measure(s): Agreement to PAR; importance of appropriate counseling within the consent process.
Result(s): Approximately 68% of individuals consented to the use of surplus embryos for embryologist training and improvement of assisted reproductive techniques, and 56% consented to the use of surplus embryos in a research project; 73.5% of men and 61.8% of women agreed to leave their cryopreserved embryos to their partners for reproductive use in the event of their death.
Conclusion(s): Our results demonstrate that a majority of both men and women agree to leave their frozen embryos to their partners for PAR in a ‘‘real life’’ context, i.e., in which they were required to provide consent for this prospective option. PAR involves complex issues, including the psychologic aspects of initiating a pregnancy while mourning the loss of a loved one or the effect on the prospective child. We argue that in light of the acceptability of PAR—as demonstrated by our results—further
research is required regarding how to best counsel and inform IVF users about the choices they are making in this context, to ensure that their consent for PAR is in fact well informed. (Fertil
Steril 2014;102:1410–5. 2014 by American Society for Reproductive Medicine.)
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Bioethics and Epigenetics
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“When the Self Is Contested Ground”: letters from Tommaso Bruni and Ilina Singh about “Anorexia Nervosa and the Language of Authenticity” (Nov-Dec 2011); and “Strings Attached”: a letter from John A. Robertson about “Conceived and... more
“When the Self Is Contested Ground”: letters from Tommaso Bruni and Ilina Singh about “Anorexia Nervosa and the Language of Authenticity” (Nov-Dec 2011); and “Strings Attached”: a letter from John A. Robertson about “Conceived and Deceived: The Medical Interests of Donor Conceived Individuals” (Jan-Feb 2012), with a reply from Vardit Ravitsky.