Centre for Research Ethics & Bioethics (CRB)

Heidi C. Howard

Heidi C. Howard

PhD Neurogenetics
Senior Researcher

Heidi Carmen Howard received her undergraduate and doctoral degrees in Biology from McGill University (Montréal, Canada). The focus of her PhD was neurogenetics and it culminated in the cloning of the gene for Andermann Syndrome (ACCPN), a rare neuropathy primarily present in the founder population of Québec. She continued her genetics training in psychiatric genetics at the Centre for Genomic Regulation in Barcelona (Spain) and at the Douglas Hospital in Montréal (Canada).

With an Erasmus Mundus fellowship, she completed the Erasmus Mundus Master of Bioethics programme in 2008 and since then, with the support of the European Commission FP7 Marie Curie Career Development Awards (2009-2011; 2011-2013) she has been working on the ethical, legal and social issues (ELSI) related to genetics and genomics as well as biobanking at KULeuven (Belgium) and inserm (France).

In the autumn of 2013 she spent a semester as assistant professor at the Radboud University Medical Centre (Netherlands). Her main areas of research are the ethical, legal and social aspects of direct-to-consumer genetic testing, public health genomics, genomic medicine, new genomic technologies, participant-centric research initiatives and the translation of genomics from the laboratory to the clinic.

Heidi Carmen Howard is also an invited scholar at the Centre of Genomics and Policy at McGill University (Montréal, Canada) and a member of the Public and Professional Policy Committee of the European Society of Human Genetics.

E-mail: heidi.howard@crb.uu.se
Phone: +46 18-471 61 70

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

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Biobank and registry ethics & law, report

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 adds competence to our team of genetic risk researchers.

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Heidi C. Howard