DNAdigest interviews the open study “Genes for Good”

Scott Vrieze

Scott Vrieze, External Collaborator at Genes for Good

1. What is Genes for Good?

Genes for Good is a research study led by Dr. Goncalo Abecasis at the University of Michigan, with the goal of discovering genes that affect risk for physical and mental health. Making these discoveries benefits from very large numbers of participants who are continually engaged with the study over time.

To do this, we have created a Facebook App (apps.facebook.com/
genesforgood) where individuals may sign up, answer questions about their health and habits, and provide a saliva sample. DNA in the saliva will then be genotyped and tested for association with the health information. This kind of study has been quite successful in finding risk genes for a wide variety of diseases, and Genes for Good will continue this tradition, hopefully on a larger scale with many tens of thousands of participants.

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2. What is your role in the Genes for Good study and how does your professional background fit?

Genes for Good is intended to be an open platform. Researchers who are interested in contributing can very easily do so. I am a clinical psychologist interested in mental health issues like depression, anxiety, and personality, so I have contributed questionnaires to measure these attributes in Genes for Good.

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3. Who can join the study and how? What are the benefits from doing so?

Anyone in the US with a Facebook account can join. Just search for the Genes for Good app in Facebook or visit apps.facebook.com/genesforgood.

The primary benefit, in our mind, is the contribution to scientific advances. Our participants are wonderful people – they are contributing information about themselves so that scientists can better understand how genes and environment cause disease and suffering. Many people engage in research not for a direct benefit to them, but because they know that their service will improve the health of generations to come including their children and grandchildren.

That said, some participants also join because Genes for Good will provide participants with information about their genes and health. We provide participants with information about their health responses and their genome, including ancestry information based on their DNA and their “raw” genotypes – the hundreds of thousands of DNA base pairs we measure in their saliva. Some participants find that fun and exciting.

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4. What is the purpose of the collected data? And how do you protect the privacy of the individual participants?

The purpose is to make discoveries about how genes influence our health. Our primary form of protection is to use secure software and hardware systems. When data is shared with outside researchers we ensure that the researcher is accountable to an ethics board at their institution and has had their research approved by that ethics board. We also strip the data of identifying information (names, addresses, etc.) whenever data is shared.

We use Facebook for a variety of reasons. First, Facebook does a good job of ensuring that Facebook users are actually real people! Second, many people go to Facebook on a regular basis. Our hope is that when they visit Facebook they will be reminded to participate in Genes for Good on an ongoing basis. Facebook is not otherwise involved in the study directly, and cannot access the data participants provide or information returned to them.

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5. Let’s say I am a researcher. What kind of collaboration can be created between me and Genes for Good?

We are open to new and imaginative ideas. Existing collaborations have involved contributing new questionnaires and data gathering techniques, analysis of existing Genes for Good data, new data visualization tools so that participants can better understand what their information means and how it is used, and proposals to launch Genes for Good in other countries. We believe that open and transparent collaboration will only result in more discoveries and a stronger study.

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6. How do you see the future development of Genes for Good?

In the near term we are working to improve the participants’ experience, to return genetic information to participants in interesting and responsible ways, and add new questionnaires on a regular basis. In the long term we hope to expand the number of participants, grow beyond the US, and implement new and exciting data collection techniques. Right now, for example, we’re exploring ways to allow participants to share physical activity information from wearable fitness trackers to improve our measures of physical activity. As technology continues to advance there will be new opportunities for participants to contribute to the study and our knowledge of how genes and environment affect health and disease.

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2 Responses

  1. December 1, 2015

    […] initiatives, and those who contribute their own data to them (see for example DNAland, OpenSNP, Genes for Good which are all initiatives aiming at data sharing for public benefit) are pioneers in creating social […]

  2. May 31, 2016

    […] Genes for Good is another project flourishing in this burgeoning niche. Genes for Good provides interested test-takers a research-based alternative to the commercial market for ancestry testing. Based at the University of Michigan, the project engages research participants through a Facebook app, providing them with an ancestry test spit kit after completion of online health surveys. In April 2016, Genes for Good announced on its blog having surpassed the 10,000 participant mark, an impressive turn-out for a project only 16 months old. Clearly, both ancestry testing and online genomic health research are of interest to researchers utilizing online methods for recruitment and members of the general public interested in online participation. […]

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