IF responds to UN Special Rapporteur questionnaire on bioethics and disability
30 September 2019 // IF has submitted a response to a questionnaire launched by the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms. Catalina Devandas-Aguilar on bioethics and disability. She requested input on various sensitive and important topics:
- Prenatal diagnosis
- Disability-related abortion
- Informed consent to medical treatment and scientific research
- Protection of persons with disabilities undergoing research
- Euthanasia and assisted suicide
IF greatly valued this opportunity to express its concerns and to highlight the importance of a debate on the criteria being used in medical decision making, such as expected quality of life, presumed unbearable suffering, hopelessness, and the dignity and rights of persons with physical and intellectual disabilities.
Any information provided to parents(-to-be) and/or persons with disabilities for screening, medical treatment or participation in research needs to be accessible, understandable, and factual, and enough time should be allowed to digest the information, ask questions, and to seek input from others in order to give informed consent.
Accurate, up-to-date, and appropriate information with regard to prenatal diagnosis and the conditions that are being screened for must be available to healthcare providers and medical students, parents(-to-be), persons with disabilities, and the general public. In addition, healthcare professionals need to be educated on the rights of persons with disabilities and trained to offer unbiased, suitable, and compassionate counselling.