Research Tools

Bukini and colleagues designed the vignette used in theis study to explore the importance of shared decision making about research participation in Ghana and Cameroon. The vignette, available in the methods section of this study, describes a hypothetical study of children with sickle cell disease. It can be used to examine whether parents would independently decide to enroll their children, or whether they whould or would seek the advice of others, including family members, community elders, etc.

Michie and Allyse developed five scenarios that describe existing and hypothetical interventions for symptoms of Down syndrome (DS): 1) prenatal physical intervention, 2) prenatal cognitive intervention, 3) pediatric physical intervention, 4) pediatric cognitive intervention, and 5) Adult treatment to reduce Alzheimers risk. Participants, consisting of family members of people with DS, were asked to choose whether or not they would have the intervention and explain their reasoning behind their choice.

This semi-structured interview guide is intended for use with individuals diagnosed with a sex chromosome aneuploidy (SCA) or with parents of a child diagnosed with a SCA. It employs open-ended questions to learn about their experiences living with and receiving care for their genetic condition, support systems, and other topics.

To examine participants' views of prenatal testing, Steinbach and colleagues developed a scenario that describes a 40-year-old pregnant patient who is offered prenatal screening for trisomies 13, 18 and 21. After reading the survey, participants were asked whether the patient should take the tests, which ones, what actions to take if the patient recieves a positive result, and other questions.

Guerrini and colleagues designed the Genetic Genealogy Experiences Survey to gather information about the experiences of users of genetic relative-finder services offered by direct-to-consumer genetic genealogy companies.

Courtright-Lim designed this decision tree to help researchers, funding agencies, institutional review boards, and ethics committees determine when social interventions may result in a better use of limited resources than developing and applying germline gene editing.

This consent form is utilized by the All of Us Research Program (All of Us), a health research program, funded by the National Institutes of Health, that will study health data from over one million people in the United States. One of the goals of All of Us is to enroll and collect data from individuals underrepresented in health research.

This form includes information for participants and collects a consent for the the All of Us Research Program (All of Us) to access to their electronic health records. All of Us is a health research program, funded by the National Institutes of Health, with the goal of studying health data from over one million people in the United States, including individuals underrepresented in health research.