Advocacy organizations for genetic diseases are increasingly becoming involved in
biomedical research, particularly translational research, in order to meet the needs of the …

Patient advocacy organizations (PAOs) are nonprofit groups that represent patients and
families affected by a significant medical condition or disease. We review some of the …

The rapid advancement of genetic science, fuelled by the Human Genome Project and other
related initiatives, promises a new kind of public health practice based on the pre-detection …

The so-called new genetics is widely predicted to radically transform medicine and public
health and deliver considerable benefits in the future. This article argues that, although it is …

Social scientists have observed previously that patient support groups began to have
significant influence over both research and clinical services of medical genetics in the early …

Many support groups are organized and run according to goals and by-laws set by
facilitators. This article introduces a model in which all goals and bylaws are created by the …

This article explores interest in a support group among 218 individuals tested for a mutation
in BRCA1, a breast and ovarian cancer susceptibility gene. When queried 4 to 7 months …

It is a commonplace for organizations with different interests to work cooperatively for shared
but limited objectives. Yet large power asymmetries present particular hazards for the …

The rapid advancement of genetic science, fuelled by the Human Genome Project and other
related initiatives, promises a new kind of public health practice based on the pre-detection …

Le test génomique prénatal non invasif (TGPNI) est un test présentement offert au Canada,
dans le cadre de programmes provinciaux de dépistage prénatal des aneuploïdies, comme …