Estimating Demand for Germline Genome Editing: An <i>In Vitro</i> Fertilization Clinic Perspective

Viotti, Manuel; Victor, Andrea; Griffin, Darren K.; Groob, Jason S; Brake, Alan; Zouves, Christo; Barnes, Frank L.

doi:10.1089/crispr.2019.0044

Cited by 14 publications

(14 citation statements)

References 51 publications

(68 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This is a very large class of diseases, and includes conditions such as infantile Tay-Sachs, cystic fibrosis, Huntington's disease, hypertrophic cardiomyopathy, β-thalassemia, and sickle cell anemia, among others. Though the overall mortality and morbidity from any one of these may be low, collectively they account for a not-insignificant amount of death and disability, and therapeutic interventions that prevent their occurrence would have more than just marginal public health benefit [50].…”

Section: What Is the Potential Clinical Utility Of Germline Gene Editmentioning

confidence: 99%

“…Prevention of these conditions in prospective persons is currently possible through preimplantation genetic diagnosis (PGD) as part of assisted reproduction. It is an open question whether GGE offers an improvement over PGD [50,54,55]. For some individuals, such as those going through in vitro fertilization (IVF) with a low number of oocytes to work with, GGE may offer a better chance of success than selection of embryos through PGD.…”

Section: What Is the Potential Clinical Utility Of Germline Gene Editmentioning

confidence: 99%

See 1 more Smart Citation

Responsible Translational Pathways for Germline Gene Editing?

Cwik

2020

Curr Stem Cell Rep

View full text Add to dashboard Cite

Purpose of Review Continued development of gene editing techniques has raised the real possibility of clinical application of germline gene editing. These results, as well as reports of an unethical experiment which resulted in the birth of at least two children from edited embryos in 2018, have highlighted the urgency and importance of ethical issues about translational pathways for editing of human germline cells. Charting responsible translational pathways for germline gene editing requires tackling some significant and complex ethical issues. Recent Findings A literature on development of clinical applications of germline gene editing is emerging, and several key ethical issues are coming into focus as major challenges for responsible translational pathways. Summary Potential clinical utility, clinical justification, and human subjects research for germline gene editing raise outstanding ethical questions. Work on these questions will help provide guidance to researchers and clinicians and direct translational projects toward justifiable applications.

show abstract

Section: What Is the Potential Clinical Utility Of Germline Gene Editmentioning

confidence: 99%

Section: What Is the Potential Clinical Utility Of Germline Gene Editmentioning

confidence: 99%

Responsible Translational Pathways for Germline Gene Editing?

Cwik

2020

Curr Stem Cell Rep

View full text Add to dashboard Cite

show abstract

“…The second CRISPR Journal reference cited in the report was a paper we published last year from Manuel Viotis and colleagues at a fertility center in Los Angeles, in which they tried to estimate how many individuals or couples might be suitable with other conditions meds for HHGE, where preimplantation genetic testing simply isn't a viable option. 8 Who are those couples, and what sort of numbers did you estimate for the cases in your first criterion if HHGE is ready to proceed? Kay Davies: As that paper points out, it's all based on a lot of assumptions.…”

Section: Daviesmentioning

confidence: 99%

Highway to HHGE: An Interview with Dame Kay E. Davies

Davies¹,

Davies

2020

The CRISPR Journal

View full text Add to dashboard Cite

Davies: Before we discuss the HHGE report, your own research for pretty much four decades has been focused on Duchenne muscular dystrophy (DMD). What drew you into that field, and why is it still such a burning passion for you? Kay Davies: It started actually in London, when you were doing your graduate studies in the early 1980s, when Bob Williamson decided that he wanted to look at the possibility of using restriction fragment length polymorphisms (RFLPs) to map the cystic fibrosis (CF) gene. I joined his lab at the time because I'd just read the David Botstein paper 3 and the Solomon and Bodmer paper 4 about RFLPs and the more general application after Y.W. Kan's paper on sickle-cell DNA diagnosis. 5 Bob and I decided to collect all of the blood samples from CF patients in the UK. And when we got all those together, we realized what an enormous task it was because we were fishing in all those autosomes for a locus we knew nothing about. So, we decided that DMD was the model for CF, and actually the CF Trust funded me to do that work. And then I met the patients, and the rest is history because they got me hooked on finding both a diagnosis and then potentially a therapy for the disease.

show abstract

“…In the case of research studies addressing potential clinical applications, there are concerns also about the uncertain medical need for such applications. b In particular, a very limited number of people may be in need of such procedures to address genetic conditions, 14,15 and it is questionable whether public resources should be used to try to address this (small) need with such a contentious procedure. Indeed, the uncertainties and the potential risks and harms involved, which include social and psychological harm as well as physical harm for the prospective children developed from genome-edited embryos, all contribute to the ethical challenges surrounding GGE in research.…”

Section: Introductionmentioning

confidence: 99%

Germline Genome Editing Research: What Are Gamete Donors (Not) Informed About in Consent Forms?

Niemiec

Howard

2020

The CRISPR Journal

View full text Add to dashboard Cite

The potential for using germline genome editing (GGE) in humans has garnered a lot of attention, both for its scientific possibilities as well as for the ethical, legal, and social challenges it ignites. The ethical debate has focused primarily on the suggestions of using GGE to establish a pregnancy (i.e., to offer it in a clinical setting), which is, to date, illegal in many jurisdictions. The use of GGE in research (where a pregnancy would not be established) has received much less attention, despite the fact that it raises serious ethical and social issues as well. Herein, we report on the analysis of informed consent forms for egg and sperm donation used in a widely publicized study where genome editing was used to correct a disease-causing genetic mutation in human embryos. Importantly, embryos were created using eggs and sperm obtained specifically for these experiments. The analysis indicates deficiencies in how the forms addressed various issues, including limited and potentially misleading information about the sensitive nature of the study, the lack of an explicit mention of genomic sequencing, as well as the poor readability of the forms. Furthermore, the arguably high compensation of U.S.$5,000 for egg donors raises questions about undue inducement to participate in research. Moreover, since the procurement of eggs involves serious health risks, it may be questioned whether research requiring such a procedure should be pursued. If such experiments are continued, donors should be informed about all relevant aspects in order to make informed decisions about participating.

show abstract

Estimating Demand for Germline Genome Editing: An In Vitro Fertilization Clinic Perspective

Abstract: The version in the Kent Academic Repository may differ from the final published version. Users are advised to check http://kar.kent.ac.uk for the status of the paper. Users should always cite the published version of record.

Cited by 14 publications

References 51 publications

Responsible Translational Pathways for Germline Gene Editing?

Responsible Translational Pathways for Germline Gene Editing?

Highway to HHGE: An Interview with Dame Kay E. Davies

Germline Genome Editing Research: What Are Gamete Donors (Not) Informed About in Consent Forms?

Contact Info

Product

Resources

About