Genomics and Ethics: Leadership is Essential

August 2011

Bartha Knoppers

Stem cell research, biological data sharing, personal privacy – just a few hot button issues in genomics. With advances in medicine and technology come new social, legal and ethical challenges. “A lot of it lends itself to fantastical science fiction scenarios,” says Bartha Maria Knoppers, LLB’78, BCL’81, director of the Centre of Genomics and Policy (CGP) at the McGill University and Génome Québec Innovation Centre. “It’s really important to contribute to a more nuanced debate.”

Knoppers recalls the start of the road that brought her to this point. In the early 1980s, Charles Scriver suggested she travel to Chicago to attend a meeting on quality assurance in the screening of newborn babies. “I said ‘what’s newborn screening?’” Knoppers remembers. In Chicago she was exposed to a battery of procedures that identify treatable genetic disorders in newborns – efforts that can enable early interventions that eliminate or reduce symptoms that, left unaddressed, could affect sufferers for life. Since then, genomics has been the cornerstone of her career.

With her diverse background in law, human rights and bioethics, Knoppers is deeply aware that genomics exceeds biology, also slipping into areas of legislation, culture, kinship, disability and health insurance. “There are philosophical issues that underlie genomes,” she says, “whether they be animal, plant, or human genomes, and whether it’s data sharing models that come from mouse consortia, or whether it’s plants being used as drugs.”

At the Centre of Genomics and Policy, Knoppers has built up a team of experts across disciplines, including ethics, bioinformatics, genotyping, microbiomes and law. Already, they are leading initiatives in the five key areas of the CGP: procreation and reproductive genetics, pediatric health, privacy, public health and personalized medicine.

Given the complexity and international scope of genetics, information sharing is key – but also highly challenging. Knoppers is working on bringing the Public Population Project in Genomics (P3G) – a tool-building organization for large biobanks and population studies wishing to share data – to McGill and the McGill University Health Centre. This project aims to help solve the problem of interoperability – the ability to merge datasets or share datasets across biobanks and, indeed, across borders.  CARTaGENE, the 20,000-person genomics resource Knoppers built in Quebec uses P3G harmonization guidelines, including policy tools. The current Canadian Partnership for Tomorrow study on chronic conditions that is recruiting 300,000 participants does likewise.

“This is ethics in action,” Knoppers says. “I’m still totally in love with it. I’m never bored.”

[Maria Turner, Abby Nichols and Laurence Miall]

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One Response to “Genomics and Ethics: Leadership is Essential”
  1. mohammad mousavi says:

    I am a medical doctor immigrating to Canada and really like to involve in your research programs.I recently attended the seminar of Dr Frede Miller about neural stem cell.Please let me know if you think that I am able to start with you.
    M Mousavi