A/HRC/43/41
painful and/or irreversible medical interventions; electroconvulsive therapy; and the
administration of psychotropic medication.
30.
Many therapeutic interventions that are within broadly accepted standards of
medical practice are nonetheless controversial from a disability perspective. For example,
although psychotropic medications are now relatively commonplace, their use raises
various ethical issues. They include the medicalization of human suffering and social
problems; the medication of challenging behaviour, particularly in children; unknown side
effects, including suicidality and medical complications; gaining informed consent in a
context of biased information and structural discrimination; and profound questions of
identity, such as the role of voice-hearing, visions and similar sensory experiences. As
pharmaceutical interventions become more sophisticated (for example, “smart” pills), there
is a need to include the voices of persons with psychosocial disabilities themselves in such
ethical discussions.
31.
Efforts to prevent disability include the use of genetic prenatal screening and genetic
diagnosis pre-implantation. Thanks to technological advances, these options are
increasingly available, take place earlier and are safer and more accessible. The cumulative
effect of individual choice, the ideal of the perfect offspring and ableism, among both
clinicians and wider society, has resulted in a steady rise of prospective parents choosing
not to have a child with a disability. In some high-income countries, high uptake rates for
screening have already been associated with significant reductions in the number of
children born with some congenital disabilities. 22
32.
From a disability rights perspective, there is a concern that such practices may
reinforce and socially validate the message that persons with disabilities ought not to have
been born. Legislative frameworks that extend the time frame for a lawful abortion or,
exceptionally, permit abortion in the presence of fetal impairment aggravate this message.
In addition, as the consequence is a smaller number of persons with disabilities being born,
some fear a reduction in disability advocacy and social support for persons with
disabilities. 23 Furthermore, health policies and abortion laws that perpetuate deep-rooted
stereotypes and stigma against persons with disabilities also undermine women’s
reproductive autonomy and choice.24 In that regard, while the issue of disability-selective
abortion requires greater attention, solutions must not compromise the right of all women,
including women with disabilities, to decide whether or not they want to continue with a
pregnancy. As interventions against sex-selective abortions have shown, abortion bans and
restrictions on the use of technologies are not only detrimental to women’s rights but also
ineffective.25
33.
As genetic research advances, the potential for genetic engineering to ensure the
presence or absence of particular genes or characteristics is becoming a reality. Gene
editing refers to the active “repair” of impairment-associated genes. Alongside the various
ethical issues raised by this technology, including those related to safety, consent,
inequalities and unintended mutations, there is concern among bioethicists and disability
rights activists that it may lead to a significant decrease in diversity per se and fewer
opportunities for those who are deemed different. 26 There are already worrisome reports
related to ongoing experimentation to repair the gene linked to deafness.
22
23
24
25
26
8
See Maria Loane and others, “Twenty-year trends in the prevalence of Down syndrome and other
trisomies in Europe: impact of maternal age and prenatal screening”, European Journal of Human
Genetics, vol. 21, No. 1 (January 2013).
See Elizabeth R. Schiltz, “Finding common ground in the disability rights critiques of selective
abortions” in In Search of Common Ground on Abortion: From Culture War to Reproductive Justice,
Robin West, Justin Murray and Meredith Esser, eds. (Farnham, Surrey, Ashgate, 2014).
See Committee on the Rights of Persons with Disabilities and Committee on the Elimination of
Discrimination against Women, joint statement (29 August 2018), available from
www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDStatements.aspx.
See World Health Organization, “Preventing gender-biased sex selection: an interagency statement.
OHCHR, UNFPA, UNICEF, UN Women and WHO” (2011).
See Nuffield Council on Bioethics, “Genome editing and human reproduction: social and ethical
issues”.
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