We are asking you to take part in a voluntary research study led by researchers at the Stanford Center for Biomedical Ethics.

KEY INFORMATION
What are social and behavioral genomics?

•  Within the past decade, sequencing of the human genome and the rapid development of large-scale DNA testing technology has given rise to a new era of scientific research.
•  Both DNA and the environment (e.g., exposure to pollution, discrimination) play a role in many aspects of who we are, including which diseases we’re likely to get, what we like and don’t like, and how we behave.
• Researchers in social and behavioral genomics use DNA to try to learn about why people behave the way they do and have the social outcomes that they do. This field studies things like intelligence, happiness, income, and addiction rather than biomedical conditions like heart disease.

What is your role in this study?
You are invited to participate in a voluntary research study exploring different stakeholders’ roles in the conduct and translation of social and behavioral genomics and their perspectives on the potential benefits and risks of this research. This study is funded by the National Institutes of Health. You will be asked to take a brief online survey to collect basic demographic information such as your race/ethnicity, gender, socioeconomic status, and educational attainment. You will also be asked to participate in a 1-hour interview to share your perspectives on the risks and potential benefits of social and behavioral genomics and the potential stakeholders involved in and strategies for mitigating the harms and promoting the benefits of this research. The interview will be audio-recorded and transcribed. Audio recordings will be destroyed after transcription. The results of this research study may be presented at scientific or professional meetings or published in scientific journals. Your individual privacy will be maintained in all published and written data resulting from the study. Your individual responses will not be attributed to you. Your decision whether or not to participate in this study will not affect your employment, medical care, etc.
 

1. Purpose: The goal of this study is to understand stakeholders’ roles in the conduct and translation of social and behavioral genomics and their perspectives on the potential benefits and risks of social and behavioral genomics.
2. Procedure: The procedure consists of an online survey, estimated to take 5-10 minutes to complete and a 1-hour interview on Zoom or the phone.
3. Risks: We do not anticipate any risks in partaking in this study.
4. Benefits: This study is not designed to benefit participants.

RISKS AND BENEFITS: We do not foresee any risks associated with this study. This study is not designed for the benefit of the participant. We cannot and do not guarantee or promise that you will receive any benefits from this study.

TIME INVOLVEMENT: Your participation will take approximately one-hour and ten minutes in total. We anticipate it will take you about ten minutes to take the pre-interview survey. The interview will last an hour.

PAYMENTS/REIMBURSEMENTS: You will not incur any costs by participating in this study. Upon completion of the interview portion of this study, you will be compensated with a $60 Amazon gift card.

PARTICIPANT’S RIGHTS: If you have read this form and have decided to participate in this project, please understand your participation is voluntary and you have the right to withdraw your consent or discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. The alternative is not to participate. You have the right to refuse to answer particular questions. If you wish to revoke your consent for the research use at any time, you must call or write to: Protocol Director, Daphne Martschenko ‪(650) 452-6604‬, daphnem@stanford.edu. Survey and interview data will be confidential and nothing will be attributed to you. The data that you submit through the survey will only be used to select participants for interview and to present aggregated results to describe the final study sample. All study data will be kept in a secure, password-protected database. The results of this research study may be presented at scientific or professional meetings or published in scientific journals. If information from this study is published or presented at scientific meetings, no names or other personal information will be used. Identifiers might be removed from identifiable private information and, after such removal, the information could be used for future research studies or distributed to another investigator for future research studies without additional informed consent from you. You will be asked to consent to data collection and to sharing de-identified data in a public, online data repository

WITHDRAWAL FROM STUDY: If you first agree to participate and then you change your mind, you are free to withdraw your consent and discontinue your participation at any time. If you decide to withdraw your consent to participate in this study, you should notify Dr. Daphne Martschenko at ‪(650) 452-6604‬ or via email at daphnem@stanford.edu. Once you reach out to Dr. Martschenko to withdraw your consent (either via the phone or in writing), you will be withdrawn from the study.

The Protocol Director may also withdraw you from the study without your consent for one or more of the following reasons
• Failure to follow the instructions of the Protocol Director and study staff.
• The study is cancelled.
• Other administrative reasons.
• Unanticipated circumstances.

CERTIFICATE OF CONFIDENTIALITY: This research is covered by a Certificate of Confidentiality from the National Institutes of Health. The researchers with this Certificate may not disclose or use information, documents, or biospecimens that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other action, suit, or proceeding, or be used as evidence, for example, if there is a court subpoena, unless you have consented for this use. Information, documents, or biospecimens protected by this Certificate cannot be disclosed to anyone else who is not connected with the research except, if there is a federal, state, or local law that requires disclosure (such as to report child abuse or communicable diseases but not for federal, state, or local civil, criminal, administrative, legislative, or other proceedings, see below); if you have consented to the disclosure; or if it is used for other scientific research, as allowed by federal regulations protecting research subjects.
 
CONTACT INFORMATION: Questions, Concerns, or Complaints: If you have any questions, concerns or complaints about this research study, its procedures, risks and benefits, or alternative courses of treatment, you should ask the Protocol Director, Daphne Martschenko. You may contact her now or later at ‪(650) 452-6604‬

Injury Notification: If you feel you have been hurt by being a part of this study, please contact the Protocol Director, Daphne Martschenko at 571-263-6650.

Independent Contact: If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a participant, please contact the Stanford Institutional Review Board (IRB) to speak to someone independent of the research team at (650)-723-5244 or toll free at 1-866-680-2906. You can also write to the Stanford IRB, Stanford University, 1705 El Camino Real, Palo Alto, CA 94306.

STATEMENT OF CONSENT: I have read this Information Sheet and understand the nature and purposes of this study. I understand that I am free to decline to participate in this study or to withdraw at any time. My decision to decline to participate or to withdraw from the study will not affect my status with this investigator. By completing the survey, I give my consent to participate in this study.

Specifically:
1. I give consent to be audiotaped during the interview portion of this study. Note that even if the interview takes place over Zoom, it will only be audio recorded and not video recorded.
2. I give consent for tapes resulting from this study to be used for transcription purposes and qualitative analysis.
3. I give consent for the research team to share de-identified data, such as redacted interview transcripts that remove identifiable information, via a public, online data repository.

Please print a copy of this page for your records. If you agree to participate in this research, please continue to complete the questionnaire.