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Medicine, Health Care and Philosophy

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02.02.2024 | Scientific Contribution

Who has a meaningful life? A care ethics analysis of selective trait abortion

verfasst von: Riley Clare Valentine

Erschienen in: Medicine, Health Care and Philosophy | Ausgabe 2/2024

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Abstract

Trait Selective Abortions (TSA) have come under critique as a medical practice that presents potential disabled infants as burdens and lacking the potential for meaningful lives. This paper, using the author’s background as a disabled person, contends that the philosophy underpinning TSAs reflects liberal society’s lack of a theory of needs. The author argues for a care ethics based approach informed by disability analyses to engage with TSAs.

Joseph Biden, “Remarks by President Biden on the Supreme Court Decision to Overturn Roe v. Wade,” White House, June 24 2022, https://www.whitehouse.gov/briefing-room/speeches-remarks/2022/06/24/remarks-by-president-biden-on-the-supreme-court-decision-to-overturn-roe-v-wade/

Lisa Smyth, “Feminism and Abortion Politics: Choice, Rights, and Reproductive Freedom,” In Women’s Studies International Forum 25, no.3(2002): 335–345.

Michael Ignatieff, The Needs of Strangers: An Essay on Privacy, Solidarity, and the Politics of Being Human (Elisabeth Sifton Books, 1985), 13.

Sophia Chae, Sheila Desai, Marjorie Crowll, and Gilda Sedgh, “Reasons Why Women Have Induced Abortions: A Synthesis of Findings from 14 Countries,” Contraception 96(2017): 235.

Diana Greene Foster, The Turnaway Study: Ten Years, a Thousand Women, and the Consequences of Having – or Being Denied – an Abortion (Simon and Schuster, 2021); Sarah Miller, Laura R. Wherry, and Diana Greene Foster, “What Happens After an Abortion Denial? A Review of Results from the Turnaway Study,” AEA Papers and Proceedings, vol. 110 (2014): 226–230.

TSA is different from sex selected abortions (SSA). Kate Greasley, mentioned later in the paper, broaches the similarities and differences between these. However, that is outside the scope of this paper.

“Common Tests During Pregnancy,” Johns Hopkins, https://www.hopkinsmedicine.org/health/wellness-and-prevention/common-tests-during-pregnancy

Adrienne Asch, “Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy,” American Journal of Public Health 89, no.11(1999): 1652.

Hans S. Reinders, The Future of the Disabled in a Liberal Society: An Ethical Analysis (University of Notre Dame Press, 2009); Chris Kaposy, “A Disability Critique of the New Prenatal Test for Down Syndrome,” Kennedy Institute of Ethics Journal 23, no.4(2013): 307.

Hans S. Reinders, The Future of the Disabled in a Liberal Society, 182.

Ibid.

Joan Tronto, Moral Boundaries: A Political Argument for an Ethic of Care (Routledge, 1994), 127.

Jonathan Herring, “Ethics of Care and the Public Good of Abortion,” University of Oxford Human Rights Hub Journal 1(2019): 2.

Eva Feder Kittay and Leo Kittay, “On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son,” In Norms and Values: Essays on the Work of Virginia Held (Rowman & Littlefield, 1998).

Carol Gilligan, In a Different Voice (Harvard University Press, 1982).

Daniel Engster, The Heart of Justice: Care Ethics and Political Theory (Oxford University Press, 2015); Nel Noddings, “Care Ethics and ‘Caring’ Organizations,” In Care Ethics and Political Theory (Oxford University Press, 2015); Nicki Ward, “Care Ethics, Intersectionality and Post Structuralism,” In Ethics of care: Critical Advances in International Perspective, (Policy Press, 2015); Jonathan Herring, “Ethics of Care.”.

Joan Tronto, Moral Boundaries, 127.

Maurice Hamington, “Politics is Not a Game: The Radical Potential of Care,” In Care Ethics and Political Theory (Oxford University Press, 2015), 281.

Maxine Eichner, “The Supportive State: Government, Dependency, and Responsibility for Caretaking,” In Care Ethics and Political Theory (Oxford University Press, 2015), 97.

Ibid., 40.

Joan Tronto, Caring Democracy: Markets, Equality, and Justice (New York University Press,

2013), 41.

Nicki Ward, “Care Ethics, Intersectionality and Post Structuralism.”.

Jonathan Herring, “The Disability Critique of Care,” Elder Law Review 8(2014): 1–15.

Jenny Morris, “Care or Empowerment? A Disability Rights Perspective,” Social Policy and Administration 31, no.1(1997): 54–60; Gillian Parker and Harriet Clarke, “Making the Ends Meet: Do Carers and Disabled People Have a Common Agenda?” Policy & Politics 30, no.3(2002): 347–359; Teppo Kröger, “Care Research and Disability Studies: Nothing in Common?” Critical Social Policy 29, no.3(2009): 404.

Rachel Adams, “Choosing Disability, Visualizing Care,” Kennedy Institute of Ethics Journal 27, no.2(2017): 303.

Pamela Cushing and Tanya Lewis, “Negotiating Mutuality and Agency in Care-Giving Relationships with Women with Intellectual Disabilities,” Hypatia 17, no.3(2002): 179.

Hans S. Reinders, The Future of the Disabled in a Liberal Society, 205.

Reinders is careful to point out that this is not universalizing; because of this, he does not advocate for limitations in reproductive legislation. I also am not advocating for limiting reproductive legislation.

Heloise Robinson, “Prenatal Testing, Disability Equality, and the Limits of the Law,” The New Bioethics 29, no.3(2023): 203; Erik Parens and Adrienne Asch, “Special Supplement: The Disability Rights Critique of Prenatal Genetic Testing Reflections and Recommendations,” The Hastings Center Report 29, no.5(1999): S1-S2.

Heloise Robinson, “Prenatal Testing,” 204.

Eva Feder Kittay, “We Have Seen the Mutants – and They Are Us: Gifts and Burdens of a Genetic Diagnosis,” in For “All of Us”? On the Weight of Genomic Knowledge, ed. J.M. Reynolds and E. Parens, Hastings Center Report 50, no.3(2020): S53.

“American with Disabilities Act,” 42(2008).

Ron Amundson, “Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics,” in Genetic Testing, Healthcare, and Disability, eds. David Wasserman, Jerome Bickerbach, and Robert Wachbrot (Cambridge University Press, 2005), 122.

CJ Gill, “What are the Problems of Having a Hidden Disability,” Post-Polio News 1(1998): 207–231; Vic Boyd, “Are Some Disabilities More Equal Than Others? Conceptualising Fluctuating or Recurring Impairments Within Contemporary Legislation and Practice,” Disability & Society 27, no.4(2012): 459–469.

Aimee Burke Valeras, “‘We Don’t Have a Box’: Understanding Hidden Disability Identity Utilizing Narrative Research Methodology,” Disability Studies Quarterly 30, no/34(2010).

Ali A. Asadi-Pooya, Mehdi Bazrafshan, and Mohen Farazdaghi, “Cluster Analysis of a Large Dataset of Patients with Lennox-Gastaut Syndrome,” Seizure 92(2021): 36–39; Stéphane Auvin et al., “The Impact of Seizure Frequency on Quality of Life in Patients with Lennox-Gastaut Syndrome or Dravet Syndrome,” Epilepsy & Behavior 123(2021): 108–239; Indar Kumar Sharawat, et al., “Efficacy and Safety of Corpus Callosotomy and Ketogenic Diet in Children with Lennox-Gastaut Syndrome: A Systematic Review and Meta-analysis,” Child’s Nervous System (2021): 1–10.

Wanjun Cui, et al., “Recent Changes in Attitudes of US Adults Toward People with Epilepsy,” Epilepsy & Behavior 52(2015): 108–118.

Eui Jung, Bo Yon Lee, and Chu Yeop Huh, “Prenatal Diagnosis of Fetal Seizure: A Case Report,” Journal of Korean Medical Science 23, no.5(2008): 906–908.

Jonathan Herring, “Ethics of Care,” 17.

Thomas D. Russell, “BUCK v. BELL, Superintendent of State Colony Epileptics and Feeble Minded, 274 US 200 (1927),” American Legal History-Russell, 18; Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck (Penguin Books, 2017).

Press Association, “Richard Dawkins: ‘Immoral’ Not to Abort if Foetus has Down’s Syndrome,” The Guardian, August 21 2014, https://www.theguardian.com/science/2014/aug/21/richard-dawkins-immoral-not-to-abort-a-downs-syndrome-foetus

Kate Greasley, Arguments about Abortion: Personhood, Morality, and Law (Oxford: Oxford University Press, 2017), 240.

Alana C. Cecchi, et al., “Screening for Tay-Sachs Disease Carriers by Full-Exon Sequencing with Novel Variant Interpretation Outperforms Enzyme Testing in a Pan-Ethnic Cohort,” Molecular Genetics & Genomic Medicine 7, no.8(2018): e836; Jaqueline A. Picache, Wei Zheng, and Catherine Z. Chen, “Therapeutic Strategies for Tay-Sachs Disease,” Frontiers in Pharmacology 13(2022); G.A. McDowell, et al., “The Presence of Two Difference Infantile Tay-Sachs Disease Mutations in a Cajun Population,” American Journal of Human Genetics 51, no.5(1992): 1071.

Adrienne Asch, “Prenatal Diagnosis,” 1654.

People with Lennox-Gastaut Syndrome are frequently not recommended to bathe without assistance due to drowning risks associated with seizing in water.

Supreme Court of the United States of America, “Planned Parenthood of Southeastern Pa. v. Casey,” 1992, https://supreme.justia.com/cases/federal/us/505/833/

Ibid.

Supreme Court of the United States, “Gonzalez v. Carhart,” 2007, https://supreme.justia.com/cases/federal/us/550/124/ There is significant scholarship debunking Kennedy’s claims; however, it is outside the scope of the paper to delve into that literature.

Jonathan Herring, “Ethics of Care.”.

Supreme Court of the United States, “Luna Perez v. Sturgis Public Schools et al.,” 2022, https://www.supremecourt.gov/opinions/22pdf/21-887_k53m.pdf

Adams, Rachel. 2017. Choosing Disability, Visualizing Care. Kennedy Institute of Ethics Journal 27 (2): 301–321.

Amundson, Ron. 2005. Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics. In Genetic Testing, Healthcare, and Disability, ed. David Wasserman, Jerome Bickerbach, and Robert Wachbrot, 122. Cambridge University Press.

Asadi-Poova, Ali A., Mehdi Bazrafshan, and Mohen Farazdaghi. 2021. Cluster Analysis of a Large Dataset of Patients with Lennox-Gastaut Syndrome. Seizure 92: 36–39.CrossRef

Asch, Adrienne. 1999. Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy. American Journal of Public Health 89 (11): 1652.CrossRef

Auvin, Stéphane, et al. 2021. The Impact of Seizure Frequency on Quality of Life in Patients with Lennox-Gastaut Syndrome or Dravet Syndrome. Epilepsy & Behavior 123: 108239.

Biden, Joseph. 2022, June 24. Remarks by President Biden on the Supreme Court Decision to Overturn Roe v. Wade. White House. https://www.whitehouse.gov/briefingroom/speeches-remarks/2022/06/24/remarks-by-president-biden-on-the-supreme-court-decision-to-overturn-roe-v-wade/.

Boyd, Vic. 2012. Are Some Disabilities More Equal Than Others? Conceptualising Fluctuating or Recurring Impairments Within Contemporary Legislation and Practice. Disability & Society 27 (4): 459–469.

Brownsword, Roger. 2023. Between Rocks and Hard Places: Good Governance in Ethically Divided Communities. The New Bioethics 29 (3): 247–264.

Cecchi, Alana C., et al. 2018. Screening for Tay-Sachs Disease Carriers by Full-Exon Sequencing with Novel Variant Interpretation Outperforms Enzyme Testing in a Pan-Ethnic Cohort. Molecular Genetics & Genomic Medicine 7 (8): e836.

Chae, Sophia, Sheila Desai, Marjorie Crowell, and Gilda Sedgh. 2017. Reasons Why Women Have Induced Abortions: A Synthesis of Findings from 14 Countries. Contraception 96: 233–241.CrossRef

Cohen, Adam. 2017. Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck. Penguin Books.

Common Tests During Pregnancy. Johns Hopkins. https://www.hopkinsmedicine.org/health/wellness-and-prevention/common-tests-during-pregnancy.

Cui, Wanjun, et al. 2015. Recent Changes in Attitudes of US Adults Toward People with Epilepsy. Epilepsy & Behavior 52: 108–118.

Cushing, Pamela, and Tanya Lewis. 2002. Negotiating Mutuality and Agency in Care-Giving Relationships with Women with Intellectual Disabilities. Hypatia 17 (3): 173–193.

Eichner, Maxine. 2015. The Supportive State: Government, Dependency, and Responsibility for Caretaking. In Care Ethics and Political Theory. Oxford University Press.

Engster, Daniel. 2015. The Heart of Justice: Care Ethics and Political Theory. Oxford University Press.

Foster, Diana Greene. 2021. The Turnaway Study: Ten Years, a Thousand Women, and the Consequences of Having – or Being Denied – an Abortion. Simon and Schuster.

Gill, C.J. 1998. What Are the Problems of Having a Hidden Disability. Post-Polio News 1: 207–231.

Gilligan, Carol. 1982. In a Different Voice. Harvard University Press.

Greasley, Kate. 2017. Arguments About Abortion: Personhood, Morality, and Law. Oxford: Oxford University Press.CrossRef

Hamington, Maurice. 2015. Politics Is Not a Game: The Radical Potential of Care. In Care Ethics and Political Theory. Oxford University Press.

Herring, Jonathan. 2014. The Disability Critique of Care. Elder Law Review 8: 1–15.

Herring, Jonathan. 2019. Ethics of Care and the Public Good of Abortion. Univrsity of Oxford Human Rights Hub Journal 1: 1–24.

Ignatieff, Michael. 1985. The Needs of Strangers: An Essay on Privacy, Solidarity, and the Politics of Being Human. Elisabeth Sifton Books.

Jung, Eui, Bo Yon Lee, and Chu Yeop Huh. 2008. Prenatal Diagnosis of Fetal Seizure: A Case Report. Journal of Korean Medical Science 23 (5): 906–908.

Kaposy, Chris. 2013. A Disability Critique of the New Prenatal Test for Down Syndrome. Kennedy Institute of Ethics Journal 23 (4): 299–324.

Kittay, Eva Feder. 2020. We Have Seen the Mutants – And They Are Us: Gifts and Burdens of a Genetic Diagnosis. In For “All of Us?” On the Weight of Genomic Knowledge, ed. J.M. Reynolds and E. Parents, S44–S53. Hastings Center Report 50 (3).

Kittay, Eva Feder. 2023. The Fallibility of Personal Experience. The American Journal of Bioethics 23 (1): 25–27.

Kittay, Eva Feder, and Leo Kittay. 1998. On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son. In Norms and Values: Essays on the Work of Virginia Held. Rowman & Littlefield.

Kröger, Teppo. 2009. Care Research and Disability Studies: Nothing in Common? Critical Social Policy 29 (3): 398–420.

McDowell, G.A., et al. 1992. The Presence of Two Difference Infantile Tay-Sachs Disease Mutations in a Cajun Population. American Journal of Human Genetics 51 (5): 1071.

Miller, Sarah, Laura R. Wherry, and Diana Greene Foster. 2014. What Happens After an Abortion Denial? A Review of Results from the Turnaway Study. AEA Papers and Proceedings 110: 226–230.

Morris, Jenny. 1997. Care or Empowerment? A Disability Rights Perspective. Social Policy and Administration 31 (1): 54–60.CrossRef

Noddings, Nel. 2015. Care Ethics and ‘Caring’ Organizations. In Care Ethics and Political Theory. Oxford University Press.

Parens, Erik, and Adrienne Asch. 1999. Special Supplement: The Disability Rights Critique of Prenatal Genetic Testing Reflections and Recommendations. The Hastings Center Report 29 (5): S1–S2.

Parker, Gilligan, and Harriet Clarke. 2002. Making the Ends Meet: Do Carers and Disabled People Have a Common Agenda? Policy & Politics 30 (3): 347–359.

Picache, Jaqueline A., Wei Zheng, and Catherine Z. Chen. 2022. Therapeutic Strategies for Tay-Sachs Disease. Frontiers in Pharmacology 13.

Press Association. 2014, August 21. Richard Dawkins: ‘Immoral’ Not to Abort If Foetus Has Down’s Syndrome. The Guardian. https://www.theguardian.com/science/2014/aug/21/richard-dawkins-immoral-not-to-abort-a-downs-syndrome-foetus.

Reinders, Hans S. 2009. The Futures of the Disabled in a Liberal Society: An Ethical Analysis. University of Notre Dame Press.

Robinson, Heloise. 2023. Prenatal Testing, Disability Equality, and the Limits of the Law. The New Bioethics 29 (3): 202–215.

Russell, Thomas D. BUCK v. BELL, Superintendent of State Colony Epileptics and Feeble Minded, 274 US 200 (1927). American Legal History-Russell 18.

Sharawat, Indar Kumar, et al. 2021. Efficacy and Safety of Corpus Callosotomy and Ketogenic Diet in Children with Lennox-Gastaut Syndrome: A Systematic Review and Meta-analysis. Child’s Nervous System: 1–10.

Smyth, Lisa. 2002. Feminism and Abortion Politics: Choice, Rights, and Reproductive Freedom. Women’s Studies International Forum 25 (3): 335–345.

Tronto, Joan. 1994. Moral Boundaries: A Political Argument for an Ethic of Care. Routledge.

Tronto, Joan. 2013. Caring Democracy: Markets, Equality, and Justice. New York University Press.

Valeras, Aimee Burke. 2010. ‘We Don’t Have a Box’: Understanding Hidden Disability Identity Utilizing Narrative Research Methodology. Disability Studies Quarterly 30 (34).

Ward, Nicki. 2015. Care Ethics, Intersectionality and Post Structuralism. In Ethics of Care: Critical Advances in International Perspective. Policy Press.

Titel: Who has a meaningful life? A care ethics analysis of selective trait abortion
verfasst von: Riley Clare Valentine
Publikationsdatum: 02.02.2024
Verlag: Springer Netherlands
Erschienen in: Medicine, Health Care and Philosophy / Ausgabe 2/2024
Print ISSN: 1386-7423
Elektronische ISSN: 1572-8633
DOI: https://doi.org/10.1007/s11019-023-10192-6

Die Highlights vom Kongress des American College of Cardiology 2024

Springer Medizin

Who has a meaningful life? A care ethics analysis of selective trait abortion

Abstract

Die Highlights vom Kongress des American College of Cardiology 2024

Springer Medizin

Abstract

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