Support communities involved in disease studies

• Published in: Nature (London) Vol. 531; no. 7593; p. 141
• Main Author: Muñoz-Sanjuan, Ignacio
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 10.03.2016; Nature Publishing Group
• Subjects: 692/308; 706/689/179; Bioethics; Biomedical Research - ethics; Clinical Trials as Topic; Community involvement; Family Planning Services; Genetic Counseling; Genetic Testing; Health Services Accessibility - ethics; Healthy Volunteers; Heterozygote; Human subjects; Humanities and Social Sciences; Humans; Huntington Disease - drug therapy; Huntington Disease - epidemiology; Huntington Disease - genetics; Huntingtons disease; Lobbying; Medical research; multidisciplinary; Quality of Life; Research Personnel; Residence Characteristics; Science; Science (multidisciplinary); Studies; Suicide; Venezuela - epidemiology; world-view; Venezuela
• ISSN: 0028-0836; 1476-4687; 1476-4687
• DOI: 10.1038/531141a

Does the biomedical community have a moral responsibility to ensure sustained support for people who were crucial to its research? I argue that it does. As a scientist dedicated to treating Huntington's disease, I struggle with the knowledge that the current quality of life of those affected is deplorable. I have seen people shunned and neglected by their relatives, sitting alone in darkened rooms, devoid of medical or social support. I have met the children of those affected, who are afraid of what will become of them. Tragically, suicide is common.