The ethics of genetic risk information

Heidi C. Howard joined CRB in April 2014. She is a biologist and bioethicist with a special interest in the ethical, legal and social issues (ELSI) of genetics and genomics. With her science background, she will add competence to our team of genetic risk researchers.

Heidi C. Howard, ResearcherHow does a geneticist become an ethicist? Heidi C Howard developed an interest in ethics during her doctoral studies. Her thesis work was on the identification of the gene responsible for Andermann Syndrome (a peripheral neuropathy associated with agenesis of the corpus callosum), which is a rare degenerative neurological disease that affects young children. As a geneticist, she studied many families in Québec affected by this recessive condition and saw how much they wanted and needed the hope that her research could offer.

“Meeting the families and seeing how vulnerable they were made me realize the real impact that genetics can potentially have on people’s lives. The parents wanted the research and were very supportive of it, and we hoped that our work would come to benefit the children as well as the communities affected by the disease”, says Heidi C. Howard.

The research results were relatively quickly translated to clinical practice and used for preconception and prenatal testing. Getting to interact with the families concerned as well as see the impact of their work, made her start thinking about the ethics of genetic risk information and how it is understood and used by patients. Genetic research results must be “translated” before becoming commonly used or understood clinical risk information that can be given to patients.

Before joining the CRB research team, Heidi C. Howard mainly studied direct-to-consumer genetic testing, public health genomics and the responsible translation of new genetic and genomic technologies into health care. Now that she is here, Heidi C. Howard will be part of Mind the Risk – an international multi-disciplinary research project funded by Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences).

With genetic risk information there are both clinical and research ethics to be considered. This is something that she will have an opportunity to explore further at CRB. But what makes genetick risk information special?

”We have always had risk information in health care. The novelty with genetic risk, and especially now, with genomic risk information is the sheer number of conditions that we can get information about. The context where we can get such information is also changing. We can go to our doctor’s to find out if we are at risk, but we could also send a sample to a commercial company and get results without necessarily ever seeing a doctor”, says Heidi C. Howard.

Heidi C. Howard, ResearcherWhere can this research add value? Mind the Risk is a six year project where a large multi-disciplinary research group will look into questions of ethics, as well as psychology and economics surrounding genetic risk information. With her science background, Heidi C. Howard is looking forward to the discussions with researchers from the humanities. She is confident that the discussion about risk from different perspectives and different cultures will produce novel and meaningful results.

“For me, CRB is already an exciting, motivating and multi-disciplinary research environment, where I can meet both senior and junior researchers and easily discuss my work. Mind the Risk is a lot like this, but on a European scale. Everyone has different backgrounds, but we all come together to further understand each other’s projects. Each person’s research will help to foster a greater understanding of the multifaceted aspects of genetic risk information and its potential impact on research and health care" says Heidi C. Howard.

About Heidi C. Howard

Heidi C. Howard is Canadian and a native French speaker. After finishing her PhD she left Canada for Europe to do a postdoc in Spain, and she has stayed. She changed research focus from genetics to ethics after her postdoc. In 2008 she finished an Erasmus Mundus Master of Bioethics. With two consecutive Marie Curie FP7 scholarships she has worked at the Katholieke Universiteit Leuven in Belgium, the Institute for Biomedical Ethics, University Basel in Switzerland & INSERM, Université Toulouse III, Paul Sabatier in France. Before joining the CRB she spent a semester as assistant professor  the Radboud University Medical Centre in the Netherlands.

Josepine Fernow 2014-09-08