Use of preimplantation genetic testing for monogenic defects (PGT-M) for adult-onset conditions: an Ethics Committee opinion
Ethics Committee of the American Society for Reproductive Medicine
Committee members:Judith Daar, Jean Benward, Lee Collins, Joseph Davis, Owen Davis, Leslie Francis, Elena Gates, Elizabeth Ginsburg, Susan Gitlin, Sigal Klipstein, Laurence McCullough, Richard Paulson, Richard Reindollar, Ginny Ryan, Mark Sauer, Sean Tipton, Lynn Westphal, Julianne Zweifel, …
Ethics Committee of the American Society for Reproductive Medicine (2018). Use of preimplantation genetic testing for monogenic defects (PGT-M) for adult-onset conditions: an Ethics Committee opinion. Fertility and sterility. https://doi.org/10.1016/j.fertnstert.2018.04.003
Ethics Committee of the American Society for Reproductive Medicine. Use of preimplantation genetic testing for monogenic defects (PGT-M) for adult-onset conditions: an Ethics Committee opinion. Fertility and sterility. 2018. doi:10.1016/j.fertnstert.2018.04.003
Ethics Committee of the American Society for Reproductive Medicine. "Use of preimplantation genetic testing for monogenic defects (PGT-M) for adult-onset conditions: an Ethics Committee opinion." Fertility and sterility, 2018.
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A 2018 ASRM Ethics Committee opinion holds embryo gene testing ethically permissible for adult-onset conditions. The Committee calls PGT-M justified when a serious illness has no safe remedy. Reproductive liberty, it says, allows testing for milder ones. It urges advice from a genetic counselor first.
Key Findings
The Committee holds PGT-M "ethically justified" for a serious adult-onset condition when no safe, effective intervention exists for that condition.
For conditions of lesser severity or penetrance, the Committee says reproductive liberty arguments "ethically allow" PGT-M. It calls the procedure "relatively low-risk" on current evidence, and says that evidence "may change."
The Committee "strongly" recommends a genetic counselor with PGT-M experience, seen before the IVF process starts. Prenatal testing, to confirm results or in their place, should also be discussed.
An IVF team is "not obligated" to transfer embryos that would result in affected offspring. Clinics should tell patients this before treatment starts.
The Committee names limits: testing covers single-gene conditions only, diagnostic error is possible, and long-term effects on offspring cannot be ruled out.
The ASRM Ethics Committee's Position
“Preimplantation genetic testing for monogenic diseases for adult-onset conditions is ethically permissible for a range of conditions including when the condition is serious and no safe, effective interventions are available.”
Quoted verbatim from this paper.
Interpretation
The document is an ethics committee opinion. Its authors reviewed published work and reasoned to a conclusion, so the paper holds no participants, outcomes or statistics of its own. The Committee says the report reflects the views of its members and does not set the single approved standard of practice. The paper also lists arguments against testing: speculative medical benefit, misdiagnosis, expense, uncertain risks, and the message sent to people living with the condition.
RRM Context
The opinion addresses couples already proceeding to IVF with embryo testing. Its call for genetic counseling before IVF starts matches the RRM principle of evaluation before treatment. The Committee writes that PGT operates by preventing the births of people with the disease. The Committee adds that IVF with PGT-M carries the risk of multiple pregnancy and no certainty of live birth.
Our editorial summary of this paper, not the article's abstract.
Abstract
Preimplantation genetic testing for monogenic diseases for adult-onset conditions is ethically permissible for a range of conditions including when the condition is serious and no safe, effective interventions are available. The Committee strongly recommends that a genetic counselor experienced with PGT-M counsel patients considering such procedures. This document replaces the document titled "Use of preimplantation genetic diagnosis for serious adult-onset conditions: a committee opinion," last published in Fertil Steril 2013;100;54-7.
Ethics Committee of the American Society for Reproductive Medicine, 2017
Ethics and Policy › Reproductive Ethics › Genetic Testing of Embryos · Clinical Guidelines and Standards › Guidelines by Issuing Body › United States Professional Societies
Judith Daar, Jean Benward, Lee Collins, Joseph Davis, Owen Davis, Leslie Francis, Elena Gates, Elizabeth Ginsburg, Susan Gitlin, Sigal Klipstein, Laurence McCullough, Richard Paulson, Richard Reindollar, Ginny Ryan, Mark Sauer, Sean Tipton, Lynn Westphal, Julianne Zweifel, 0000-0003-0284-2845
J Daar, J Benward, L Collins, Joe Davis, Joey Davis, J Davis, O Davis, L Francis, E Gates, Liz Ginsburg, Beth Ginsburg, Betsy Ginsburg, E Ginsburg, Sue Gitlin, S Gitlin, S Klipstein, Larry McCullough, L McCullough, Rick Paulson, Dick Paulson, Rich Paulson, R Paulson, Rick Reindollar, Dick Reindollar, Rich Reindollar, R Reindollar, G Ryan, M Sauer, S Tipton, L Westphal, J Zweifel
PMID 29935659 29935659 DOI 10.1016/j.fertnstert.2018.04.003 10.1016/j.fertnstert.2018.04.003 Ethics Committee of the American Society for Reproductive Medicine et al. 2018, Ethics Committee of the American Society for Reproductive Medicine 2018
