Legal Challenges to Newborn Screening Research
Join the discussion with panelists Eric Hendricks, JD and Aaron Goldenberg, PhD moderated by Natasha Bonhomme.
Genomic Information and the Right Not to Know Questionnaire
Flatau and colleagues developed this survey to assess informational preferences among German patients, healthcare professionals, and members of the public in a genetic testing context. The survey assesses participant characteristics, preferences about the return of genetic results, attitudes about physician disclosure, and willingness to share test results.
Consent Preferences of UK Research Volunteers for Genetic and Clinical Studies Survey
This survey assesses views on aspects of the consent process, including willingness to share medical information and DNA for different research purposes, including controversial areas of research.
The Genetics of Alzheimer's (Video)
This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component. This video underscores Alzheimer's disease as a complex and multi-determined condition; it clarifies that predictive genetic testing offers a probability of developing the disease, not a definite result. For a study that utilizes this video: Pavarini, G., Hamdi, L., Lorimer, J., & Singh, I. (2021).
Demographic Patterns of Eugenic Sterilization in Five U.S. States: Mixed Methods Investigation of Reproductive Control of the 'Unfit'
PROJECT NARRATIVE Between 1907 and the mid-1970s, 32 US states passed and implemented eugenic sterilization laws that authorized the sterilization of people considered unfit. Our epidemiological, historical and mixed-methods analysis of over 32,000 eugenic sterilization requests in five US states (California, North Carolina, Iowa, Michigan and Utah) identifies varying demographic patterns and documents changes in how eugenics laws were applied over time.