November 7, 2013

expert reaction to launch of PGP-UK

The SMC hosted the press launch of the open access UK Personal Genome Project (PGP-UK); a new addition to the UK’s genomics landscape.

Dr Catherine Elliott, Director, Clinical Research Interests at the Medical Research Council said:

“There is an increasingly collaborative relationship between the public and researchers who use medical data to pinpoint the causes, treatment and prevention of disease. The value of linking genomic information to medical data is immense and genomics underpins much of the MRC’s work. But researchers must do their utmost to protect privacy through appropriate consent and robustly enforced data security systems and also need to ensure patients can give properly informed consent for their data to be used and are aware of any risk.  In this day and age, cast-iron guarantees of absolute anonymity just don’t exist. What can be guaranteed is that patients will increasingly benefit from data sharing between researchers.”

Sir John Chisholm, executive chairman of Genomics England, said:

“We welcome PGP as a contribution to understanding the whole genome and its role in human health. There are many who are working in the area of whole genome sequencing and PGP is a useful and welcome addition.

“There are significant differences between PGP and our programme, notably that we are focusing on NHS patients with diagnosed diseases. We therefore have a different approach to privacy and data access and take this very seriously, because we have a duty of care to NHS patients.

“The database we will create will only be available to approved researchers, who would face legal action if they tried to re-identify participants, and this database will be fully protected behind the NHS firewall. The very small risk of patients being re-identified should be set against the huge benefit that the creation of this database will provide to tackling serious diseases that impact and prematurely end the lives of millions of people.

“We would want anyone consenting to their DNA being used for sequencing to have a clear understanding of what they are contributing to, and to do so on a voluntary basis which we understand will be the case with PGP.

“Anyone who takes part in any initiative that involves giving a DNA sample for sequencing should be as clear at the time of giving their consent as they can be of how that sample will be used, and who will have access to it, and what future purposes it can be put to.”

Dr Jess Buxton, geneticist and Trustee of Progress Educational Trust, said:

“I completed my PhD in human genetics in the early 1990s. With the technology available at that time, it took days to get information on just a handful of individual genetic variations. It’s incredible to think that just 20 years later, the opportunity to have my entire genome sequenced would arise. With the consent of my close family members, I will be embracing the opportunity to participate in such an important and exciting research project. The findings of the PGP and other genomic database projects will be key to understanding the relationships between genes, health and disease – knowledge that will have a real impact on healthcare for future generations.”

Dr Leila Luheshi Programme Lead (Science) PHG Foundation, said: 

“The PHG Foundation welcomes the establishment of the Personal Genomes Project in the UK.  By sharing their genomic and associated health data openly participants will be making a significant contribution to our wider understanding of how variation in our genome relates to our health over the course of our life. We particularly welcome the focus of the PGP-UK on engaging participants in ongoing educational programmes and dicussion of their analysed genomes.  Increasing awareness and understanding of the impact of genomics on health amongst the public will be vital to the success of initiatives, such as 100,000 genomes, in paving the way for the introduction of genomic medicine in the UK.”

Dr Jeremy Farrar, Director of the Wellcome Trust, said:

“For people who are comfortable sharing their medical and genomic data, the Personal Genome Project UK provides a welcome opportunity to contribute to a resource of scientific value. Participants should appreciate the potential implications for their own privacy, and that of their families.

“It is important to recognise that this is not the only viable model for genomic databases. People who wish to take part in genomic research should understand that there are alternative approaches that do not require them to publish their medical and genetic information. Most genomic databases have strong safeguards for managing risks to participants’ privacy.”

Sharmila Nebhrajani, Chief Executive Association of Medical Research Charities, said:

“There is no doubting the scientific potential of genomics both to help us understand the pathways of disease and to offer the chance of new treatments. And this is a really exciting initiative.

“But in its strength lies also real ethical challenge. Genome sequencing changes our view of disease from one driven by symptoms and pathology to one driven by an understanding of molecular biology. Patients who take the altruistic route to allow their genomic information to be used for research need to feel confident that their data will be treated with care and dignity. And for most people that will mean with their confidentiality respected. 

“Social media does show us that notions of personal privacy are changing but nevertheless those who do decide to make their genomic data available on an open source basis such as the PGP should understand the implications of that decision. That the data revealed is a permanent marker of them as individuals and indeed not only of them but also of their families; that the genomic data may show the presence of late onset diseases that have yet to manifest themselves

Professor John Hardy, Chair of Molecular Biology of Neurological Disease at the UCL Institute of Neurology, said:

“I think this is a great and necessary project which will help us understand how genetic variability affects our risk of disease and our responses to treatment: I will be volunteering.”