New eugenics: UN disability expert warns against ‘ableism’ in medical practice

GENEVA (28 February 2020) – "Current developments in medical research and practice may revive eugenic ideas if safeguards for those affected are not ensured," today said the UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas, during the presentation of her latest report to the UN Human Rights Council.

The UN expert explained that developments in gene therapy, genetic engineering and prenatal screening experienced enormous growth, increasing our power to repair the body and prevent disease, but cautioned about "eliminating" human characteristics deemed undesirable.

"People with disabilities are genuinely concerned that these developments could result in new eugenic practices and further undermine social acceptance and solidarity towards disability - and more broadly, towards human diversity," she said.

In her report, Devandas also expressed her concerns on the impact of euthanasia and assisted suicide for persons with disabilities.

"If assisted dying is made available for persons with health conditions or impairments, but who are not terminally ill, a social assumption could be made that it is better to be dead than to live with a disability," the expert warned.

"People have the right to live and to die with dignity, but we cannot accept that people choose to end their lives because of social stigma, isolation or lack of access to personal assistance or disability-related services."

Another major concern, Devandas stressed, is the absence of persons with disabilities in crucial debates on medical research and practice. "Without their experiences directly informing those debates, narratives suggesting that living with disabilities should be prevented become reinforced and socially validated."

The Special Rapporteur explained that "ableism" is at the root of the problem. "If the life experiences of people with disabilities continue to be undervalued, no progress will be made."

"What we need is a profound cultural transformation on the way society relates to the difference. That is a commitment to embrace disability as a positive aspect of human diversity. States must combat all forms of discrimination based on disability," the human rights expert concluded.

Devandas also reported back to the Human Rights Council on her visits to Kuwait, Canada and Norway.

ENDS

Ms Catalina Devandas (Costa Rica) was designated as the first Special Rapporteur on the rights of persons with disabilities in June 2014 by the UN Human Rights Council. She has worked extensively on the rights of persons with disabilities and inclusive development for the past 20 years, including with the World Bank, the United Nations, and international donor organizations. Her work priorities include socioeconomic inclusion, the promotion of full citizenship of persons with disabilities, and embracing diversity/understanding that persons with disabilities are part of human diversity.

The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council's independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organisation and serve in their individual capacity.

For press enquiries and additional information, please contact Ms Cristina Michels (+41 22 928 9866 / cmichels@ohchr.org), Ms Azin Tadjdini, (+41 22 917 9400, atadjdini@ohchr.org), or write to sr.disability@ohchr.org

For media inquiries related to other UN independent experts please contact the Media Section (+ 41 22 928 9855 / xcelaya@ohchr.org)

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