-
Notifications
You must be signed in to change notification settings - Fork 4
General FAQ
That is a decision you should make after thoroughly reading and understanding the participation documents on the Harvard PGP site. Should you decide to join the Harvard PGP, you will then need to successfully complete the enrollment process. Participation isn't for everyone.
Yes, we are still accepting volunteers age 18 and older. Note that in August 2015 we reduced the minimum enrollment age from 21 to 18. You can find out more about participating in the Harvard Personal Genome Project sign up page
To date, the PGP remains an unprecedented project. No other United States studies are generating and publicly sharing diverse and identifiable personal data. Given this unique position, the Harvard PGP feels strongly that all participants need to understand clearly what the personal implications are before they participate. We also feel strongly that it is our duty to lay the best ethical foundation possible for any future studies that may follow the PGP model.
It is critical in groundbreaking studies like this one that participants have a strong understanding of the complex, nontrivial risks involved in participation, and that necessarily requires a significant consent process.
Once you are enrolled in the Harvard PGP, there are many ways to participate that are extremely valuable to researchers even before your genome is sequenced. This is often an overlooked component of the Harvard PGP, and as a participant, it is important to recognize that the data you share, with our without a sequenced genome, is still vital to researchers and lays the groundwork for revolutionizing the way human genmoics research is conducted and funded.
Some of the ways you can participate prior to sequencing:
- Trait surveys - This standardized data allows researchers to set a foundation for understanding more about your "phenotype". Taken as a whole, this data helps establish prevalence of and associations between these various traits and diseases in participants
- Donate data you already have or may later obtain - by donating your 23andme, ancestry, microbiome, or other data, or your medical health records, you help enrich the datasets that researchers can draw upon and increase the likelihood that researchers working on a specific disease will find the PGP dataset of use.
- Keep your profile up to date - by keeping your data up to date, including medical data and any other data you are willing to share, you provide invaluable resources to researchers.
- Third-party studies - The Harvard PGP periodically connects participants with other opportunities like research studies or surveys that might be appropriate or of interest to our participants. All participants qualify for some of these activities and for others, only participants with sequenced genomes can participate.
- Conferences and Labs - The Harvard PGP hosts an annual conference and participant-oriented labs event in Boston called the GETConference and GETLabs. In 2015 the event is entitled GET Global and will be held in Vienna, Austria, in order to celebrate our 3 international partners, PGP Canada, PGP UK, and Genom Austria. We also partnered with the Mind First Foundation for the first MindEx Conference and PGPalooza, another annual Boston event open to PGP participants, first held in 2015. These events put researchers and participants face-to-face.
If you are a US citizen or permanent resident, you are eligible to become a participant in the Harvard PGP project even if you are residing in another country. However, participation in our project might be limited, since collection of samples can only be done at this time in group events in the US. At this point we aren’t even able to accept samples collected from local US labs or physicians. Of course, if you happen to be in the US when a collection event is happening, you are more than welcome to attend.
As a participant, we welcome donated data. So if you are unable to attend a collection event but have other data available you are willing to donate to the project such as health data, completion of our trait surveys, 23andme or other direct to consumer sequencing data, etc., that information is very helpful to researchers as well.
If you are not already aware, PersonalGenomes.org now has other international partners, and perhaps given your location, one of them may be a good fit for you. They are Genom Austria, PGP UK, and PGP Canada.
Should you still be interested in participating in our study, feel free to fill out your international address for now. US citizenship is required, but a US address is not required for participation. We use your address to target geographic notification for collection events, and if we start shipping kits again, then we would only be able to support US addresses for that (at that time a US address would be required to receive a kit).
The article "Why public genomics is not a purely personal decision" by Dan Vorhaus may be a useful one to share with your family. It is an article published in Genomes Unzipped where Dan Vorhaus discussing the potential impact of public genomics on the families of participants. In Dan Vorhaus's article, he also includes a copy of the letter he sent to his own family.
Once you have passed the enrollment requirements for participation in the PGP, there are no selection or prioritization criteria other than "the ability to give a sample at a collection event" that determine whether a participant would potentially have a genome sequenced and returned to them. There is no prioritization in response to donations, and also no prioritization based on when a participant joined the project (i.e. there is no "queue"). Sequencing is still a costly and time-consuming process, and it occurs as resources are available.
While we don’t prioritize sequencing in return for donations, participants are welcome to pursue sequencing through third parties and donate their data to the PGP; or participate in the recently announced sequencing opportunity for PGP participants through Veritas Genetics.
Please note that, due to funding and staffing constraints, we are not yet able to sequence all enrolled individuals.
When our project produces genome data for a participant, this typically means:
- Full "genome" sequence data, not genotyping. (See the Biostars.org answer "Difference Between Genotyping And Resequencing" for an explanation of the difference)
- Raw data access is provided to participants, in the format we received from the sequencing provider.
- We also currently provide a semi-automated genome report that describes reported effects for some variants within the genome data.
- This report is NOT clinical: it is limited in scope and may contain errors. The database of knowledge for genome variants is incomplete, and some reported effects are erroneous.
- As described in our consent, genome data will become public 30 days after your have private access. Additional technical files may become public without additional notice.
- When public, your genome data is associated with your "public profile".
- Currently, our genomes are produced by Complete Genomics. Technical details about their raw data files can be found in their documentation.
- We share a genome's raw "sequence" data (variant and coverage information). Large technical files might not be in the initial release. If/when we do make additional files public, you'll have access to these by virtue of knowing your participant ID.
The Harvard PGP isn't able to do clinical investigations for specific diseases. If you're interested in connecting to clinical genetics groups regarding your rare disease and genome, you might be interested in the Matchmaker Exchange
We deeply appreciate how willing our participants are to publicly share their genetic data. Often participants have become interested in this mission as a result their own genetic disease, and together they are building valuable public data for understanding our genomes.
Unfortunately, our project does not provide medical testing. If you need genetic testing for a suspected genetic disorder you must receive clinical genetic testing through your physician. Our project is regrettably unable to assist individuals in determining the causes of their personal genetic diseases.