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Anticipating issues related to increasing preimplantation genetic diagnosis use: a research agenda

https://doi.org/10.1016/S1472-6483(10)60188-5Get rights and content

Abstract

Increasing use of preimplantation genetic diagnosis (PGD) poses numerous clinical, social, psychological, ethical, legal and policy dilemmas, many of which have received little attention. Patients and providers are now considering and using PGD for a widening array of genetic disorders, and patients may increasingly seek ‘designer babies.’ In the USA, although governmental oversight policies have been discussed, few specific guidelines exist. Hence, increasingly, patients and providers will face challenging ethical and policy questions of when and for whom to use PGD, and how it should be financed. These issues should be better clarified and addressed through collection of data concerning the current use of PGD in the USA, including factors involved in decision making about PGD use, as well as the education of the various communities that are, and should be, involved in its implementation. Improved understanding of these issues will ultimately enhance the development and implementation of future clinical guidelines and policies.

Section snippets

Robert Klitzman, MD, is as Associate Professor of Clinical Psychiatry in the College of Physicians and Surgeons and the Mailman School of Public Health at Columbia University. He is the Director of the Ethics and Policy Core of the HIV Center, and a member of the Division of Psychiatry, Law and Ethics, and co-founded and for 5 years co-directed the Center for Bioethics there. He has written numerous articles, and books (including most recently, When Doctors Become Patients), exploring ethical

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      It also opens the way for fertility preservation both for medical and non-medical reasons (Bhatia and Campo-Engelstein, 2018; Dondorp et al., 2012). Preimplantation Genetic Diagnosis (PGD), introduced in 1990, is typically practiced to prevent the birth of infants with severe disorders, usually monogenic, of early onset, and of a high level of penetrance (Batzer and Ravitsky, 2009; Klitzman, 2008). However, it is also occasionally used for severe diseases of late onset and partial penetrance, such as neurodegenerative disorders and genetic malignancy risks (Altarescu et al., 2015).

    • The decision-making process of genetically at-risk couples considering preimplantation genetic diagnosis: Initial findings from a grounded theory study

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      Lingering questions remain surrounding how social and personal factors such as cost, greater social acceptance, past reproductive history, and religious views impact the decision and ultimately how couples construct preferences and values to determine whether to use PGD. Research that further examines these underlying processes regarding how couples move into each of the decision types, in a larger and more theoretically diverse sample, is needed and would benefit couples, clinicians, and policy makers (Green & Guyer, 2011; Hershberger & Pierce, 2010; Klitzman et al., 2008). Clinicians can apply the findings through increased understanding and recognition of the decision-making process that couples undergo surrounding PGD use by tailoring counseling, education, and support during the four phases of the model.

    • High-risk consumers' perceptions of preimplantation genetic diagnosis for hereditary cancers: A systematic review and meta-analysis

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      Because PGD is procedurally performed in conjunction with standard IVF procedures, it is difficult to know whether these adverse outcomes are the result of PGD or the IVF process, although recent research suggests that there are no significant differences found between the outcomes of PGD born children and IVF born children.14,15,16 Ethical concerns of IVF and PGD include the potential discarding of embryos that are positive for the hereditary condition, the long-term storage of embryos, and embryo donation.17,18,19 A considerable amount of research has focused on the ethical implications of PGD for gender selection and other physical attributes, a relatively new use of PGD.

    • Unraveling Preimplantation Genetic Diagnosis for High-Risk Couples: Implications for Nurses at the Front Line of Care

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      Another important implication is the need for nurses to encourage and support research in the field. Especially significant is research that is aimed at understanding and answering challenging decision-making questions surrounding PGD use (Klitzman, Appelbaum, Chung, & Sauer, 2008). Nurses can assist in this effort by informing couples about ongoing research in this area and advocating for additional governmental and private research support.

    • Opinions concerning pre-implantation genetic diagnosis and sex selection among gynecologist-obstetricians in Brazil

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      In our study agreement with PGD was higher (71.6%) than agreement with SS (46.2%). In spite of ethical concerns for non-medical PGD indications, it has become widely practiced throughout the world, and it can substantially decrease the eventual risks of passing a genetic condition to the offspring [28,29]. Respondents who had children were more likely to approve of PGD, probably due to the experience as parents, they are more likely to be concerned about the health of an offspring.

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    Robert Klitzman, MD, is as Associate Professor of Clinical Psychiatry in the College of Physicians and Surgeons and the Mailman School of Public Health at Columbia University. He is the Director of the Ethics and Policy Core of the HIV Center, and a member of the Division of Psychiatry, Law and Ethics, and co-founded and for 5 years co-directed the Center for Bioethics there. He has written numerous articles, and books (including most recently, When Doctors Become Patients), exploring ethical and policy issues concerning genetics, stigma and discrimination of genetic disease and HIV, professional socialization and training, and other areas.

    Declaration: The authors report no financial or commercial conflicts of interest.

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