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Personal Genome Project

An introduction to personal genomics

This resource provides teachers with a guided introduction to the Personal Genome Project and an opportunity to explore online resources at different levels.

Download the resource including background information, ideas for classroom use, and PGP profile sheets to guide exploration of online data (0.9 MB PDF).

The Personal Genome Project (PGP) is a project dedicated to creating a totally unique scientific resource. The project involves recruiting people to have their entire genome sequenced and to have their results, together with personal data about their health and their lives, made publicly available online. The idea is to create a resource that researchers worldwide can use to advance our collective understanding of genetics, biology, and health.

Background

Who are the participants?

The first 10 people to have their genomes sequenced by the PGP are called ‘the PGP 10’. The PGP 10 were recruited in the USA in 2007, and included the genetics professor who founded the PGP (Dr George Church), and a mix of men and women of different ages.

The project aims to recruit a total of 100,000 people worldwide, from a diverse range of genetic, social and environmental backgrounds. Theoretically, anyone who meets the eligibility requirements (e.g. being at least 18 years old) can volunteer to participate. So far, the project is up and running in the USA, UK and Canada. There have been discussions about a PGP Australia.

What does being part of the PGP involve?

People can sign up online to be part of the PGP. When they sign up, they consent to have their entire genome sequenced and shared on the internet. They give samples of their blood, saliva, and skin cells, and provide detailed information about their health and lifestyle.

Giving consent to have your genome sequenced

People who sign up for the PGP are doing so on the basis that it’s not anonymous, that information about them will become publicly available, and that any researcher anywhere can use their data. 

The people running the PGP take informed consent very seriously. Every participant is required to take an exam to show that they understand the risks and protocols involved, and to score 100% on that exam. 

However, some people believe that this type of test doesn’t capture whether a person is informed enough.

What kinds of results are people getting?

People who have had their genomes sequenced are getting some results that have serious implications for their health. For example, a young woman found out she has an increased risk of Alzheimer’s disease. A grandmother found out she has a high risk of breast cancer. A middle-aged journalist found out he has a genetic predisposition to a rare heart condition.

Who has access to the results generated by the PGP?

The results of the PGP are available online for anyone to access (see https://my.pgp-hms.org/). The intention is to make the results accessible to scientists world-wide so they can use the data for their research. In reality, though, anyone with access to the internet can see the results. 

How would you feel about releasing your information to the world?

How could science teachers use personal genomes?

For Science teachers, the PGP provides an excellent example of ‘Science as a Human Endeavour’. 

The PGP involves everyday people who have chosen to have science and technology applied to their lives in a very personal way. This goes beyond the scientists who generate and interpret the data, and puts a human face on the science.

Where could the PGP be included?

PGP-related activities would be ideal for including in a Year 10 Genetics unit, specifically linking to:
LW3 Advances in scientific understanding often rely on developments in technology, and technological advances are often linked to scientific discoveries. (ACSHE158, ACSHE192).

How could students explore the topic?

There are many different ways students could explore the topic and apply their knowledge and understanding.

  • Students could research information about the PGP and imagine they are a counsellor asked to advise to someone thinking about having their genome sequenced… what would they tell them?
  • Working in groups, students could take on the role of different characters and give their opinion of the PGP as part of a role play e.g. someone thinking of having their genome sequenced, their child, their employer or insurer, their doctor or their partner.
  • Students could construct a PNI (positive, negative, interesting) chart for the PGP.
  • Students could discuss whether or not they would have their genome sequenced, and if so, under what conditions?
  • A list of medical reasons for having your genome sequenced could be compiled.
  • Student could be given scenarios about people finding out they have particular medical conditions, then discuss what actions or life choices they would take.

Useful resources

The PGP – what it is, how to participate, using PGP data:

Documentary film about the PGP

The PGP 10: three video documentaries about the first people to have their genomes sequenced:

Nova Science Now: Personal Genome Project 

New York Times article ‘My genome, My self’ by Steven Pinker (one of the PGP 10): 

Article about potential impacts on the families of people who make their genomes public:

Pioneers of Personal Genome Sequencing playlist from personalgenomes.org: