Choosing Down Syndrome

From Basic Bioethics

Choosing Down Syndrome

Ethics and New Prenatal Testing Technologies

By Chris Kaposy

An argument that more people should have children with Down syndrome, written from a pro-choice, disability-positive perspective.

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Summary

An argument that more people should have children with Down syndrome, written from a pro-choice, disability-positive perspective.

The rate at which parents choose to terminate a pregnancy when prenatal tests indicate that the fetus has Down syndrome is between 60 and 90 percent. In Choosing Down Syndrome, Chris Kaposy offers a carefully reasoned ethical argument in favor of choosing to have such a child. Arguing from a pro-choice, disability-positive perspective, Kaposy makes the case that there is a common social bias against cognitive disability that influences decisions about prenatal testing and terminating pregnancies, and that more people should resist this bias by having children with Down syndrome.

Drawing on accounts by parents of children with Down syndrome, and arguing for their objectivity, Kaposy finds that these parents see themselves and their families as having benefitted from having a child with Down syndrome. To counter those who might characterize these accounts as based on self-deception or expressing adaptive preference, Kaposy cites supporting evidence, including divorce rates and observational studies showing that families including children with Down syndrome typically function well. Himself the father of a child with Down syndrome, Kaposy argues that cognitive disability associated with Down syndrome does not lead to diminished well-being. He argues further that parental expectations are influenced by neoliberal ideologies that unduly focus on the supposed diminished economic potential of a person with Down syndrome.

Kaposy does not advocate restricting access to abortion or prenatal testing for Down syndrome, and he does not argue that it is ethically mandatory in all cases to give birth to a child with Down syndrome. People should be free to make important decisions based on their values. Kaposy's argument shows that it may be consistent with their values to welcome a child with Down syndrome into the family.

Hardcover

$27.95 T | £22.00 ISBN: 9780262037716 240 pp. | 6 in x 9 in

Reviews

  • ...Kaposy offers a well-informed, thoughtful, and compassionate argument for why prospective parents might not just accept but welcome a child with Down syndrome into their families....Kaposy's critical generosity is striking in today's combative and polarized political atmosphere. His measured tone is an especially welcome corrective to the nasty and divisive voices that so often dominate debates over abortion.

    Christian Century

Endorsements

  • In this lucid and thought-provoking book, Chris Kaposy takes on the ethics of prenatal selection against Down syndrome. Challenging some of the 'common-sense' assumptions of mainstream bioethical and biomedical thinking about people with intellectual disabilities, Kaposy offers a new way of approaching the minefield of moral decisions raised by selective reproductive technologies. Choosing Down Syndrome is sure to become a benchmark in thinking through disability, normalcy, and prenatal choice.

    Jackie Leach Scully

    Executive Director, Policy Ethics and Life Sciences Research Centre

  • In this deeply thoughtful and bold book, Chris Kaposy addresses what could sound at first like a question of interest to only a few: should prospective parents selectively abort fetuses with Down syndrome? But in giving his answer, he shows why the question should be of interest to all: it requires us to figure out no less than what kind of people we want to be and what kind of society we want to live in. He challenges us to imagine a radical reorientation of values—where we come to prize solidarity as much as autonomy, to recognize our vulnerability as much as our independence, and to celebrate our capacity for acceptance as much as our capacity for control.

    Erik Parens

    Senior Research Scholar, The Hastings Center; author of Shaping Our Selves: On Technology, Flourishing, and a Habit of Thinking

  • A highly accessible work that manages to be both sensitive and sensible. Unlike many mainstream philosophers, Kaposy does not dismiss the lived experiences of persons with Down syndrome and their families, but engages with them.

    Simo Vehmas

    Professor, Department of Special Education, Stockholm University