In this article, using theories of procedural justice and 'slow violence', we consider potential reform of the Human Fertilisation and Embryology Act 1990. Our theoretical discussion is underpinned by findings from the ConnecteDNA project, exploring how people affected by donor conception experience direct-to-consumer genetic testing (DTCGT). The negative impacts of DTCGT, especially shock discoveries about the circumstances of someone's conception in adulthood, are linked to donor anonymity, and how its continued protection is experienced as a barrier to the rights and agency of donor-conceived people. We focus on two key issues relating to the donor information access process set out in section 31ZA of the 1990 Act. The first is that it excludes certain cohorts of donor-conceived people, creating inequalities of access to donor information. The second is the impact of the use of DTCGT to search for that information. We discuss what a procedurally just process of law reform would look like, concluding that, whatever (prospective) approach to donor anonymity is taken, the donor information access process should be the same for all donor-conceived people. We thus argue that, even were the status quo to be maintained, reform of the donor information access process with retrospective effect would be required.
{"title":"Donor conception, direct-to-consumer genetic testing, choices, and procedural justice: an argument for reform of the Human Fertilisation and Embryology Act 1990.","authors":"Caroline A B Redhead, Lucy Frith","doi":"10.1093/medlaw/fwae028","DOIUrl":"https://doi.org/10.1093/medlaw/fwae028","url":null,"abstract":"<p><p>In this article, using theories of procedural justice and 'slow violence', we consider potential reform of the Human Fertilisation and Embryology Act 1990. Our theoretical discussion is underpinned by findings from the ConnecteDNA project, exploring how people affected by donor conception experience direct-to-consumer genetic testing (DTCGT). The negative impacts of DTCGT, especially shock discoveries about the circumstances of someone's conception in adulthood, are linked to donor anonymity, and how its continued protection is experienced as a barrier to the rights and agency of donor-conceived people. We focus on two key issues relating to the donor information access process set out in section 31ZA of the 1990 Act. The first is that it excludes certain cohorts of donor-conceived people, creating inequalities of access to donor information. The second is the impact of the use of DTCGT to search for that information. We discuss what a procedurally just process of law reform would look like, concluding that, whatever (prospective) approach to donor anonymity is taken, the donor information access process should be the same for all donor-conceived people. We thus argue that, even were the status quo to be maintained, reform of the donor information access process with retrospective effect would be required.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789565","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Guy's and St Thomas'-v-Knight [2021] EWHC 25: Dignity in English law.","authors":"Melanie J Weismann","doi":"10.1093/medlaw/fwae027","DOIUrl":"10.1093/medlaw/fwae027","url":null,"abstract":"","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141767769","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sara A Attinger, Emily Jackson, Isabel Karpin, Ian Kerridge, Ainsley J Newson, Cameron Stewart, Lucy van de Wiel, Wendy Lipworth
In Australia and the UK, commercialization and corporatization of assisted reproductive technologies have created a marketplace of clinics, products, and services. While this has arguably increased choice for patients, 'choice', shaped by commercial imperatives may not mean better-quality care. At present, regulation of clinics (including clinic-corporations) and clinicians focuses on the doctor-patient dyad and the clinic-consumer dyad. Scant attention has been paid to the conflicts between the clinic-corporation's duty to its shareholders and investors, the medical profession's duty to the corporations within which they practice, and the obligations of both clinicians and corporations to patients and to health systems. Frameworks of regulation based in corporate governance and business ethics, such as stakeholder models and 'corporate social responsibility', have well-recognized limits and may not translate well into healthcare settings. This means that existing governance frameworks may not meet the needs of patients or health systems. We argue for the development of novel regulatory approaches that more explicitly characterize the obligations that both corporations and clinicians in corporate environments have to patients and to society, and that promote fulfilment of these obligations. We consider mechanisms for application in the multi-jurisdictional setting of Australia, and the single jurisdictional settings of the UK.
{"title":"Addressing the consequences of the corporatization of reproductive medicine.","authors":"Sara A Attinger, Emily Jackson, Isabel Karpin, Ian Kerridge, Ainsley J Newson, Cameron Stewart, Lucy van de Wiel, Wendy Lipworth","doi":"10.1093/medlaw/fwae018","DOIUrl":"https://doi.org/10.1093/medlaw/fwae018","url":null,"abstract":"<p><p>In Australia and the UK, commercialization and corporatization of assisted reproductive technologies have created a marketplace of clinics, products, and services. While this has arguably increased choice for patients, 'choice', shaped by commercial imperatives may not mean better-quality care. At present, regulation of clinics (including clinic-corporations) and clinicians focuses on the doctor-patient dyad and the clinic-consumer dyad. Scant attention has been paid to the conflicts between the clinic-corporation's duty to its shareholders and investors, the medical profession's duty to the corporations within which they practice, and the obligations of both clinicians and corporations to patients and to health systems. Frameworks of regulation based in corporate governance and business ethics, such as stakeholder models and 'corporate social responsibility', have well-recognized limits and may not translate well into healthcare settings. This means that existing governance frameworks may not meet the needs of patients or health systems. We argue for the development of novel regulatory approaches that more explicitly characterize the obligations that both corporations and clinicians in corporate environments have to patients and to society, and that promote fulfilment of these obligations. We consider mechanisms for application in the multi-jurisdictional setting of Australia, and the single jurisdictional settings of the UK.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141763995","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This article adds to the still limited scholarship on the impact of abortion laws and policies on people with disabilities and those with diminished capacity who seek abortion. We argue that neither the legal nor policy framework currently operating in England and Wales adequately incorporates and protects the rights of people with disabilities or those experiencing mental ill-health. Rather, the law and policy framework jeopardizes their reproductive agency. We argue that greater attention to and incorporation of standards contained within the UN Convention on the Rights of Persons with Disabilities (including the sources produced by its Committee) and implementation of guidelines produced by the World Health Organization would result in a rights-affirming framework that supports disabled women's reproductive agency, enhances their effective enjoyment of human rights, and supports them in accessing quality abortion care.
{"title":"Towards a rights-based approach for disabled women's access to abortion.","authors":"Magdalena Furgalska, Fiona de Londras","doi":"10.1093/medlaw/fwae026","DOIUrl":"https://doi.org/10.1093/medlaw/fwae026","url":null,"abstract":"<p><p>This article adds to the still limited scholarship on the impact of abortion laws and policies on people with disabilities and those with diminished capacity who seek abortion. We argue that neither the legal nor policy framework currently operating in England and Wales adequately incorporates and protects the rights of people with disabilities or those experiencing mental ill-health. Rather, the law and policy framework jeopardizes their reproductive agency. We argue that greater attention to and incorporation of standards contained within the UN Convention on the Rights of Persons with Disabilities (including the sources produced by its Committee) and implementation of guidelines produced by the World Health Organization would result in a rights-affirming framework that supports disabled women's reproductive agency, enhances their effective enjoyment of human rights, and supports them in accessing quality abortion care.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141635233","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Fiona Kelly, Deborah Dempsey and Adrienne Byrt (eds), Donor-Linked Family in the Digital Age: Relatedness and Regulation","authors":"A. Martani","doi":"10.1093/medlaw/fwae025","DOIUrl":"https://doi.org/10.1093/medlaw/fwae025","url":null,"abstract":"","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141645375","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Where parents seek treatment for their young child that healthcare professionals cannot agree to, the High Court can determine what is in the child's best interests. Some activists and academics seek change to impose threshold criteria that would bolster the decision-making rights of parents and reduce deference to clinicians and the courts. We defend the best interests standard against arguments that a higher threshold of 'significant harm' should apply. We do so from ethical, legal, and clinical perspectives. The matter is of significant moral and practical importance, especially in light of the divergence of academic opinion, the burgeoning number of cases coming before the courts and recent case law and statutory attempts to effect change. We begin by disputing ethical claims that a significant harm threshold is preferable to the best interests standard, and then we set out jurisprudential and practical arguments that demonstrate the imprudence of a significant harm threshold and defend the established yardstick of best interests.
{"title":"How should we decide how to treat the child: harm versus best interests in cases of disagreement.","authors":"David Archard, Emma Cave, Joe Brierley","doi":"10.1093/medlaw/fwad040","DOIUrl":"10.1093/medlaw/fwad040","url":null,"abstract":"<p><p>Where parents seek treatment for their young child that healthcare professionals cannot agree to, the High Court can determine what is in the child's best interests. Some activists and academics seek change to impose threshold criteria that would bolster the decision-making rights of parents and reduce deference to clinicians and the courts. We defend the best interests standard against arguments that a higher threshold of 'significant harm' should apply. We do so from ethical, legal, and clinical perspectives. The matter is of significant moral and practical importance, especially in light of the divergence of academic opinion, the burgeoning number of cases coming before the courts and recent case law and statutory attempts to effect change. We begin by disputing ethical claims that a significant harm threshold is preferable to the best interests standard, and then we set out jurisprudential and practical arguments that demonstrate the imprudence of a significant harm threshold and defend the established yardstick of best interests.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11132700/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138488857","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Heritable human genome editing (HHGE) to correct a nuclear gene sequence that would result in a serious genetic condition in a future child is presented as 'treatment' in various ethics and policy materials, and as morally preferable to the 'selection' practice of preimplantation genetic testing (PGT), which is subject to the disability critique. However, whether HHGE is 'treatment' for a future child, or another form of 'selection', or whether HHGE instead 'treats' prospective parents, are now central questions in the debate regarding its possible legalisation. This article argues that the idea of 'treatment' for a future child is largely a proxy for 'seriousness of purpose', intended to distinguish HHGE to avoid serious genetic conditions from less obviously justifiable uses; that HHGE is best understood, and morally justified, as a form of 'treatment' for prospective parents who strongly desire an unaffected genetically related child and who have no, or poor, options to achieve this; that HHGE would be morally permissible if consistent with that child's welfare; that legalisation is supportable with reference to the right to respect for private and family life under Article 8 of the European Convention on Human Rights; and that HHGE is morally distinguishable from PGT.
{"title":"Heritable human genome editing: correction, selection and treatment.","authors":"Rosamund Scott","doi":"10.1093/medlaw/fwae003","DOIUrl":"10.1093/medlaw/fwae003","url":null,"abstract":"<p><p>Heritable human genome editing (HHGE) to correct a nuclear gene sequence that would result in a serious genetic condition in a future child is presented as 'treatment' in various ethics and policy materials, and as morally preferable to the 'selection' practice of preimplantation genetic testing (PGT), which is subject to the disability critique. However, whether HHGE is 'treatment' for a future child, or another form of 'selection', or whether HHGE instead 'treats' prospective parents, are now central questions in the debate regarding its possible legalisation. This article argues that the idea of 'treatment' for a future child is largely a proxy for 'seriousness of purpose', intended to distinguish HHGE to avoid serious genetic conditions from less obviously justifiable uses; that HHGE is best understood, and morally justified, as a form of 'treatment' for prospective parents who strongly desire an unaffected genetically related child and who have no, or poor, options to achieve this; that HHGE would be morally permissible if consistent with that child's welfare; that legalisation is supportable with reference to the right to respect for private and family life under Article 8 of the European Convention on Human Rights; and that HHGE is morally distinguishable from PGT.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11132701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140186067","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Case Comment-JJ v Spectrum Community Health: When Medical Paternalism Meets Prisoners' Dignity.","authors":"Angelika R Reichstein","doi":"10.1093/medlaw/fwae005","DOIUrl":"10.1093/medlaw/fwae005","url":null,"abstract":"","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140194881","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The European Court of Human Rights (ECtHR) case law on cross-border surrogacy establishes that a 'general and absolute impossibility' of obtaining recognition of the relationship, legally established in another country, between a surrogate-born child and their intended parents will violate the child's right to respect for private life. This approach requires States to accommodate familial bonds created through cross-border surrogacy and limits the margin of appreciation available to States to determine their national response. In recent case law, the ECtHR has adopted an interventionist approach in respect of national decision-making and has gone further than might be expected under the principle of subsidiarity. Examination of the emerging body of jurisprudence on cross-border surrogacy, however, reveals a preference for 'traditional' family formations, with the ECtHR tending to adopt a less interventionist and more deferential approach to national decision-making where the family at the centre of the case deviates from the structure of the family reflected in the seminal cross-border surrogacy case of Mennesson v France App no 65192/11 (ECtHR, 26 June 2014). This approach leads to inconsistency in the cross-border surrogacy case law as it creates something of a moving target for the vindication of children's rights in 'less traditional' family forms.
{"title":"Accommodations of private and family life and non-traditional families: the limits of deference in cases of cross-border surrogacy before the European Court of Human Rights.","authors":"Lydia Bracken","doi":"10.1093/medlaw/fwad038","DOIUrl":"10.1093/medlaw/fwad038","url":null,"abstract":"<p><p>The European Court of Human Rights (ECtHR) case law on cross-border surrogacy establishes that a 'general and absolute impossibility' of obtaining recognition of the relationship, legally established in another country, between a surrogate-born child and their intended parents will violate the child's right to respect for private life. This approach requires States to accommodate familial bonds created through cross-border surrogacy and limits the margin of appreciation available to States to determine their national response. In recent case law, the ECtHR has adopted an interventionist approach in respect of national decision-making and has gone further than might be expected under the principle of subsidiarity. Examination of the emerging body of jurisprudence on cross-border surrogacy, however, reveals a preference for 'traditional' family formations, with the ECtHR tending to adopt a less interventionist and more deferential approach to national decision-making where the family at the centre of the case deviates from the structure of the family reflected in the seminal cross-border surrogacy case of Mennesson v France App no 65192/11 (ECtHR, 26 June 2014). This approach leads to inconsistency in the cross-border surrogacy case law as it creates something of a moving target for the vindication of children's rights in 'less traditional' family forms.</p>","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89720117","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Indi Gregory: A Wider Perspective on Children's Best Interests at the End-of-life.","authors":"Kevin De Sabbata, Abigail Pearson","doi":"10.1093/medlaw/fwae006","DOIUrl":"10.1093/medlaw/fwae006","url":null,"abstract":"","PeriodicalId":49146,"journal":{"name":"Medical Law Review","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2024-05-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140177315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}