42 U.S.C. § 283a–3 — Establishment of program regarding DES

(a) In general: The Director of NIH must set up a program to conduct and support research and training, share health information, and run other programs about diagnosing and treating conditions linked to exposure to the drug diethylstilbestrol, called "DES" in this section. (b) Education programs: As part of that program, the Director must consult with nonprofit private groups that represent people exposed to DES, and then run or support programs that teach health professionals and the public about the drug — including why it matters to identify and treat people who were exposed to it. (c) Longitudinal studies: After consulting the Office of Research on Women's Health, the Director — acting through the appropriate national research institutes — must also run or support one or more long-term studies. These studies must track the following: (1) for women who were pregnant and given DES on or after January 1, 1938, the studies look at how often they get any disease or disorder, including breast cancer, cancers of the reproductive organs, and immune system problems such as autoimmune disease; (2) for women who were exposed to DES before birth (in utero), the studies look at how often they get clear cell cancer, including cancer that comes back, along with that cancer's long-term health effects and the effects of its treatments; (3) for men and women exposed to DES in utero, the studies look at how often they get any disease or disorder, including problems with the reproductive system and the immune system; and (4) for the children of people who were exposed to DES in utero, the studies look at how often they get any disease or disorder. (d) Exposure to DES in utero: A person counts as having been exposed to DES in utero if their biological mother was given DES on or after January 1, 1938, during the pregnancy that led to that person's birth.