The Personal Genome Project (PGP) at Harvard
Author: Disabled World : Contact: Disabled World (www.disabled-world.com)
Published: 2015-03-27 : (Rev. 2020-09-29)
Synopsis and Key Points:
Information regarding the Harvard Personal Genome Project, the founding project in the PGP network.
The Human Genome Project (HGP) goal isdetermining the sequence of chemical base pairs which make up human DNA, and identifying and mapping all genes of the human genome from a physical and functional standpoint.
The Personal Genome Project has pioneered legal, ethical and technical aspects related to the creation of public resources involving highly identifiable data such as human genomes.
The Personal Genome Project (PGP) at Harvard was founded in the year 2005 and is dedicated to the creation of public genome, health and trait data. Sharing data is crucial to scientific progress, yet has been dampened by traditional research practices. The PGP at Harvard's approach is to invite participants who are willing to publicly share their personal data for the greater good of all people.
In modern molecular biology and genetics, the genome is defined as the genetic material of an organism. It is encoded either in DNA or, for RNA viruses, in RNA. The term was created in 1920 by Hans Winkler, professor of botany at the University of Hamburg, Germany. The genome includes both the genes and the non-coding sequences of the DNA/RNA. Genetics is the study of genes, what they are and how they work.
An analogy to the human genome stored on DNA is that of instructions stored in a book:
- The book (genome) would contain 23 chapters (chromosomes).
- Each chapter contains 48 to 250 million letters (A,C,G,T) without spaces.
- Therefore, the book contains over 3.2 billion letters total.
- The book fits into a cell nucleus the size of a pinpoint.
- At least one copy of the book (all 23 chapters) is contained in most cells of our body. The only exception in humans is found in mature red blood cells which become enucleated during development and therefore lack a genome.
Human Genome Project
The Human Genome Project (HGP) is an international scientific research project with the goal of determining the sequence of chemical base pairs which make up human DNA, and of identifying and mapping all of the genes of the human genome from both a physical and functional standpoint.
The Harvard Personal Genome Project is the founding project in the PGP network. The project hosts publicly shared genomic and health data from thousands of people who participate. PGP Harvard is a member of the Global Network of Personal Genome Projects (PGP) which is a group of research studies creating freely available scientific resources that bring together genomic, human trait data and environmental data donated by those who volunteer for the project. George Church of Harvard Medical School initiated the project. The Personal Genome Project has pioneered legal, ethical and technical aspects related to the creation of public resources involving highly identifiable data such as human genomes.
PGP Harvard's Public Methods, Materials and Data
PGP Harvard believes sharing is good for both society and science. Their project is dedicated to the creation of public resources that everyone has access to. Confidentiality, privacy and anonymity are impossible to guarantee in a context such as this research study, where public sharing of genetic data is an explicit goal. Due to this, PGP Harvard's project collaborates with those who participate and are fully aware of the privacy concerns and implications of making their data public. Volunteering for the project is not for everyone - yet those who join and participate make a valuable and lasting contribution to science.
PGP Harvard respects the people behind the data they collect and aims to maintain strong relationships with those who participate. The project wants to collaborate on tracking health data and additional traits as they unfold over a period of time. The project also desires to better understand the risks and benefits related to sharing and accessing personal genomes and other types of data.
The genome is only a part of the story. Genes interact with the environment to form traits. People who participate in PGP Harvard might choose to contribute other public data in order to build public records of their health and traits. The project attempts to connect participants with education, research and citizen science projects that are connected to personal genome data.
Team Members at PGP Harvard
Team members at PGP Harvard include Madeleine Ball, Jason Bobe and Michael Chou among others.
Madeleine Ball is Director of Research for the project and holds a PhD. She has been involved in the development of the computational and literature review methods used to interpret PGP genomes and is also a leading developer of, 'GET-Evidence,' which is the project's system for genome interpretation. Madeleine is an advocate for using Wikipedia as a resource for knowledge sharing. Her personal contributions include the Genetics page and additional core genetics material, as well as assisting with the development of an offline version of Wikipedia that is now being used by hundreds of thousands of children.
Another member of PGP Harvard's team is Jason Bobe, Director of Community. Jason is the founding Executive director of, 'PersonalGenomes.org,' and has served as the Director of Community for the project since the year 2007. He's also the Curator and Executive Producer of the annual, 'Genomes, Environments and Traits,' conference. Jason was invited to speak to the Presidential Commission for the Study of Bio-ethical Issues and is a consistent commentator on the importance of citizen science, decentralized access to genomic studies and DIY-bio.
Doctor Michael Chou is Director of Human Subjects Research at PGP Harvard. He is a Postdoctoral Research Fellow in the Church Lab at Harvard Medical School. Dr. Chou's research concentrates on the development of genomic sequencing approaches with the goal of understanding neuro-genetic forms of diseases. In Dr. Chou's current research, he is using next-generation sequencing to identify both known and novel genetic causes of Amyotrophic Lateral Sclerosis or, 'Lou Gehrig's Disease.'
Signing Up for PGP Harvard
Enrollment in the Harvard PGP involves an online process. People who are considering participation should closely review the project's study guide and consent forms. In order to qualify for enrollment, prospective participants have to complete an online examination to demonstrate their understanding of the risks and protocols related to being a member of the Harvard PGP. The requirements for participation include the following:
- At least twenty-one years of age
- A United States citizen or permanent resident
- A willingness to share personal genetic, health and trait data in a public and non-anonymous way
- Capable of giving autonomous consent; PGP Harvard does not permit enrollment through legal guardianship
Current students and employees of George Church, the principal investigator, are not eligible to participate. While identical twins are indeed welcome, both twins have to complete the enrollment process in order to be eligible.
Consent for Participation or Full-Consent
The consent for participation or, 'full-consent,' is the main consent document people who participate are expected to both understand and agree to when they enroll with PGP Harvard. Participants must also pursue the project's study guide, consent for eligibility screening, as well as the project's, 'Material Transfer Agreement or, 'MTA.'
PGP Harvard's study guide explains a number of the project's key protocols, as well as risks potential participants face when receiving and publishing whole genome data through the project. People have to pass the project's examination which tests understanding of the material before they are eligible to enroll in PGP Harvard's study.
Consent for Eligibility Screening:
People who participate in PGP Harvard have to agree to this prior to starting the enrollment process. The Consent for Eligibility Screening is also referred to as the, 'mini-consent.'
Material Transfer Agreement (MTA):
PGP Harvard's, 'Material Transfer Agreement,' or, 'MTA,' governs the exchange or use of materials such as DNA, tissue samples, and/or cell lines.
Donation of your genome and health data to science is a wonderful way to enable advances in the understanding of human genetics, health and biology. PGP Harvard is looking for volunteers who are willing to donate diverse personal data with the goal of the data becoming a public resource. Open data is a crucial part of the scientific method, although genomes are both identifiable and predictive.
Due to this fact, many studies opt to withhold data from those who participate and restrict access to researchers. PGP Harvard's public data is a common ground to collaborate and improve the project's understanding of genomes. The project is a member of the, 'Global Network of Personal Genome Projects.' Since the Personal Genome Project was launched at Harvard Medical School in 2005, the network has grown to include researchers at a number of leading institutions around the world today.
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