Genes for Good is a research project and team led by Gonçalo Abecasis, a biostatistics professor at the University of Michigan. The study aims to amass a large DNA database, then combine that with personal health history survey data, to provide data for genetic studies about health and disease. So far, the study contains the following:
With this data, the team will be able to carry out genetic association studies, hoping to learn more about links between genetic mutations and disease, as well as gene interaction with our environment, which leads to disease.
To participate, members of the general public join a Facebook group/app. Health history and daily tracking surveys are facilitated through the app. Once 15 Health History Surveys and 20 Daily Tracking Surveys have been completed, they earn a free DNA kit.
Surveys are completed, as well as daily health tracking, all within a simple Facebook App. Once your results are ready, you can view it on the app under the Your Genome section of the Genes for Good App. Your results are unlocked with a six-digit code for privacy. It can be viewed on a mobile device or on a PC.
Health History Surveys
The health history questions include personal queries about your own lifelong health history, behaviors, influences, with some questions about family health history.
Daily Tracking Surveys
Participants in the project will provide daily health tracking information through the app, including information about physical and mental health. Daily Tracking will include inputting information about your physical activity, as well as other health and behavior markers:
The study asks you to submit your data at least twice per week.
Participants must meet the following requirements:
People can receive a few different benefits from participating in the study. It’s an easy way to track your daily health, activity, and stress level. You can also compare your health history to others who participate.
Participants get free access to genetic testing, including information about their ancestry, as well as the raw data files.
Tens of thousands of genetic variants will be genotyped. You can access the study's preliminary report at genesforgood.org.
Participating in the study is totally voluntary and you can withdraw whenever you want. When you withdraw from the study, your data is still included in the study, but your name, Facebook ID, IP address, mailing address, and phone number are removed.
Your age, sex, and zip code will still be attached to your survey responses and DNA data.
We can't all be scientists or researchers, but by participating in this study, you get to do your part to help cure cancer and common diseases, as well as get access to genetic variants recorded for you for free. This can be useful in many ways. You can get medical, health, wellness, and additional ancestral data by your raw genetic data, provided via VCF and 23andMe-type file formats, uploaded to third-party analysis sites like sequencing.com or SelfDecode.
While people can participate by just helping provide survey data, people that qualify earn a free DNA test to learn about their genetic genealogy.
Participants who submit a saliva sample get the following data about their ancestry:
Study participants will have access to download their raw genetic data, a record of 500,000 positions on their DNA, from microarray assay testing, in VCF format and 23andMe-type file format.
Your DNA data, before being imputed, called the unphased dataset, is what you will want to upload to other DNA testing services, like sequencing.com, to receive more analysis.
DNA testing doesn't always come for free. Currently, the study has reached capacity. The Genes for Good site has this notification:
"Please note: Due to high interest, we have reached our capacity sooner than expected and we are not currently sending out spit kits. You can still participate by answering surveys if you wish. If we are able to genotype more participants in the future, we will contact you via email."
It's not called a spit kit for nothing. This type of DNA kit includes a vial that you spit your saliva sample into, and a chemical solution that mixes with your saliva to make it stable. When it comes to at-home DNA samples, this one is a little bit harder for the participant to do than a cheek swab sample, but it's also free.
This is not a commercially available product. This is a research study that people can volunteer to participate in, in exchange for free DNA testing that provides information about your genetic ancestry. The emphasis is on research needs. For that reason, there are several ways that, from a consumer perspective, your experience will be different. Here are a few examples:
Most DNA testing facilities are CLIA certified. Genes for Good is not. It is a research lab facility. It's not certified for clinical testing. So, any health information you learn will need to be verified with additional testing at the Doctor.
However, most commercial DNA testing companies in the United States, while using CLIA-certified labs, still include the same caveat about any health risk screening that you receive. Their data, for the most part, includes a legal caveat: not to be used for diagnostic purposes.
Little interpretation of the data, besides ancestry information, is provided to study participants. On top of that, if you're looking for health screening information you will have to upload your data to a third party analysis for algorithm tool. These aren't hard to find, but, due to the University of Michigan's research study rules, they can only tell you two things. They can tell you about your ancestry info, and your raw genetic data.
As this is an ongoing research study, not a for-profit company that promises fast results, it can take up to two weeks to get the DNA kit and about four months for samples to make it through processing at the lab.
However, you will receive notifications when the status changes, via the Spit Kit Status section of your account.
With a small reference data set, you aren't going to get the type of in-depth historical aspect result that you would from a specialist name brand, like AncestryDNA, or 23andMe, which both offer breakdowns into more than 1,000 genetic groups, or regions. Those companies can break your data down into hundreds of different ethnicity groups.
Offering more and more analysis for consumers is what makes them money. It's what funds their research and makes them money. Hence, the offering of more and more analysis, and more and more breakdown into increasingly diverse groups of ethnicities.
If you do get the free testing through Genes for Good, you will get your data but the analysis is limited to large groups and there are only seven:
Additionally, Genes for Good states: "We may choose to round these percentages to 1/16ths or 1/32nds to reflect likely proportions of genetic ancestry and reduce noise in the estimates."
However, you must remember that the difference in (autosomal) DNA results presented to consumers is based on the algorithm that reads the data file. If you participate, you come away with your raw data.
The study is mainly facilitated through a Facebook application. Keep in mind that participant information is not visible to Facebook. Facebook doesn't get information about you from the study or your survey results. Facebook can only see whether or not you are using the app, as well as your previously provided information. All DNA data is stored securely at the University of Michigan.
There should be a login through Google in the future, but not yet. You need to have a Facebook account to take part in the Genes for Good study. So, for the meantime, participation is limited to Facebook users. So, if you have social media or Cambridge Analytica scared you away, this might not be the best fit.
The only way to view info about this research study is if you are a participant. Currently, there is no portal for non-participants to login to view the app. It's a benefit of participating.