Restricting Access, Stigmatizing Disability?

Berens, Noah C.; Wasserman, David

doi:10.1080/15265161.2021.2013989

Cited by 3 publications

(2 citation statements)

References 10 publications

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“…19 If only testing for particular conditions is allowed, this makes implicit normative judgments about which kinds of conditions and disabilities justify termination of a pregnancy. 20 Reed has recently argued that the expressivist objection is more powerful in reference to assisted dying than in reference to prenatal diagnosis, even though the former has received less attention. He argues that if assisted dying is legally allowed only for patients who are suffering from irremediable or terminal fulfilment of her autonomous preferences.…”

Section: The Expressivist Objectionmentioning

confidence: 99%

“…There, it has been argued that restricting prenatal genetic testing to clinically ‘severe’ conditions sends a negative message to persons affected by those conditions 19. If only testing for particular conditions is allowed, this makes implicit normative judgments about which kinds of conditions and disabilities justify termination of a pregnancy 20…”

Section: The Expressivist Objectionmentioning

confidence: 99%

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An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws

Braun

2022

J Med Ethics

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In several jurisdictions, irremediable suffering from a medical condition is a legal requirement for access to assisted dying. According to the expressivist objection, allowing assisted dying for a specific group of persons, such as those with irremediable medical conditions, expresses the judgment that their lives are not worth living. While the expressivist objection has often been used to argue that assisted dying should not be legalised, I show that there is an alternative solution available to its proponents. An autonomy-based approach to assisted suicide regards the provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests. Such an approach has been put forward by a recent judgment of the German Federal Constitutional Court, which understands assisted suicide as an expression of the person’s right to a self-determined death. It does not allow for beneficence-based restrictions regarding the person’s suffering or medical diagnosis and therefore avoids the expressivist objection. I argue that on an autonomy-based approach, assisted suicide should not be understood as a medical procedure but rather as the person’s autonomous action.

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Section: The Expressivist Objectionmentioning

confidence: 99%

Section: The Expressivist Objectionmentioning

confidence: 99%

An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws

Braun

2022

J Med Ethics

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Access to Expanded Prenatal Genetic Testing: Response to Open Peer Commentaries

Bayefsky

Berkman

2022

The American Journal of Bioethics

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Screening embryos for polygenic disease risk: a review of epidemiological, clinical, and ethical considerations

Capalbo,

de Wert,

Mertes

et al. 2024

Human Reproduction Update

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BACKGROUND The genetic composition of embryos generated by in vitro fertilization (IVF) can be examined with preimplantation genetic testing (PGT). Until recently, PGT was limited to detecting single-gene, high-risk pathogenic variants, large structural variants, and aneuploidy. Recent advances have made genome-wide genotyping of IVF embryos feasible and affordable, raising the possibility of screening embryos for their risk of polygenic diseases such as breast cancer, hypertension, diabetes, or schizophrenia. Despite a heated debate around this new technology, called polygenic embryo screening (PES; also PGT-P), it is already available to IVF patients in some countries. Several articles have studied epidemiological, clinical, and ethical perspectives on PES; however, a comprehensive, principled review of this emerging field is missing. OBJECTIVE AND RATIONALE This review has four main goals. First, given the interdisciplinary nature of PES studies, we aim to provide a self-contained educational background about PES to reproductive specialists interested in the subject. Second, we provide a comprehensive and critical review of arguments for and against the introduction of PES, crystallizing and prioritizing the key issues. We also cover the attitudes of IVF patients, clinicians, and the public towards PES. Third, we distinguish between possible future groups of PES patients, highlighting the benefits and harms pertaining to each group. Finally, our review, which is supported by ESHRE, is intended to aid healthcare professionals and policymakers in decision-making regarding whether to introduce PES in the clinic, and if so, how, and to whom. SEARCH METHODS We searched for PubMed-indexed articles published between 1/1/2003 and 1/3/2024 using the terms ‘polygenic embryo screening’, ‘polygenic preimplantation’, and ‘PGT-P’. We limited the review to primary research papers in English whose main focus was PES for medical conditions. We also included papers that did not appear in the search but were deemed relevant. OUTCOMES The main theoretical benefit of PES is a reduction in lifetime polygenic disease risk for children born after screening. The magnitude of the risk reduction has been predicted based on statistical modelling, simulations, and sibling pair analyses. Results based on all methods suggest that under the best-case scenario, large relative risk reductions are possible for one or more diseases. However, as these models abstract several practical limitations, the realized benefits may be smaller, particularly due to a limited number of embryos and unclear future accuracy of the risk estimates. PES may negatively impact patients and their future children, as well as society. The main personal harms are an unindicated IVF treatment, a possible reduction in IVF success rates, and patient confusion, incomplete counselling, and choice overload. The main possible societal harms include discarded embryos, an increasing demand for ‘designer babies’, overemphasis of the genetic determinants of disease, unequal access, and lower utility in people of non-European ancestries. Benefits and harms will vary across the main potential patient groups, comprising patients already requiring IVF, fertile people with a history of a severe polygenic disease, and fertile healthy people. In the United States, the attitudes of IVF patients and the public towards PES seem positive, while healthcare professionals are cautious, sceptical about clinical utility, and concerned about patient counselling. WIDER IMPLICATIONS The theoretical potential of PES to reduce risk across multiple polygenic diseases requires further research into its benefits and harms. Given the large number of practical limitations and possible harms, particularly unnecessary IVF treatments and discarded viable embryos, PES should be offered only within a research context before further clarity is achieved regarding its balance of benefits and harms. The gap in attitudes between healthcare professionals and the public needs to be narrowed by expanding public and patient education and providing resources for informative and unbiased genetic counselling.

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Restricting Access, Stigmatizing Disability?

Cited by 3 publications

References 10 publications

An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws

An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws

Access to Expanded Prenatal Genetic Testing: Response to Open Peer Commentaries

Screening embryos for polygenic disease risk: a review of epidemiological, clinical, and ethical considerations

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