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genomics

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Variable Question text Label
benefits_risks_randomWhether Risks and Benefits information will be displayed on study participation screenrandom number for showing risks/benefits info
gene001What is the study about? As part of our ongoing study of Americans’ health and financial situations, this research project would collect and analyze genetic data from saliva samples. We hope the genetic data, analyzed in combination with survey responses, will lead to greater understanding of the lives of Americans of all ages. Their physical, cognitive and mental health, socio-economic status, happiness, personality, behaviors, choices and their social, family, and work relations and environments.

This genetic data, called DNA, is passed down from your parents to you. It affects your physical characteristics, such as your height, health, and your risk for some diseases. Differences in our genetic code help explain why some people develop certain diseases and others do not, and may play a role in behavior.

From this, we hope to learn, for example, what environments and circumstances lower or increase the genetic risk of developing cognitive impairment and dementia. This knowledge can then be used to identify ways in which the well-being, health and aging of Americans can be improved.

Study Procedures: This study will be completely voluntary.
  • You will make the decision to participate or not after reviewing information about the study and getting all of your questions answered.
  • Participants will provide a saliva sample in a kit that we will send to your home.
  • We will extract DNA from the sample, create codes from the DNA, and use those codes as part of our analysis of UAS survey responses.
  • The saliva sample will be stored in a facility that meets all standards of the National Institutes of Health for data security.
  • No identifiers will be associated with the codes we extract to use for analysis.
  • Participants can withdraw their consent to participate at any time.

^FLgene001 Compensation:
^gene_treatment.

From what you know now, how likely would you be to volunteer to participate in this study? No matter what you tell us now, you will have another chance to make the decision again if the study goes forward. 		hypothetical consent question for genomic study
gene002We are considering also offering volunteers a free gift membership in Ancestry.com or some other company that analyzes the DNA in your saliva to provide information about your origins, ethnicity, and DNA matches to other family members. The account would be completely separate from our research project. You could choose to use the gift membership, give it to someone else, or not use it. We would not have access to any of your Ancestry.com information.

If we offered a gift membership in a family origin service like Ancestry.com, in addition to the ^FLgene002 compensation we would offer for your time, how likely would you be to volunteer to participate in this study? 		likelihood to participate if offered membership to Ancestry
gene003We would like to learn about reasons why people may not want to participate in this study. Could you tell us in a few words or sentences what would keep you from volunteering for the study?reasons for not participating in genomic study
gene_treatmentwhich treatment for compensation