Heidi C. Howard

Heidi C. Howard

PhD Neurogenetics
Senior Researcher

Heidi Carmen Howard is a senior researcher leading a multidisciplinary team working on the ethical, legal, social, and policy aspects of new technologies, especially in genetics and genomics. In particular, she focuses on using multi- and interdisciplinary approaches with a large emphasis on empirical research to study the challenges and implications of novel technologies (e.g. gene editing, next generation sequencing) and their responsible translation for end users and society. Current projects include themes such as consent for genomics in the clinic and gene editing in research; commercial genomics and direct-to-consumer genetics; (forensic) biobanking; public health genomics; participant-centric research initiatives; public engagement and how best to merge different stakeholder voices in policy; as well as conceptual issues related to risk information and uncertainty in genetics and genomics.

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


Dr. Howard is the principal investigator on a Swedish Research Council (VR) funded-grant (480,000 Euro; 2018-2021) on the ELSI of gene editing. She is an active and productive member of the European Society of Human Genetics ELSI group (the Public and professional policy committee) in which she has co-authored many policy documents in genetics and genomics. She is a member of the Common Service ELSI team of the Biobanking Infrastructure BBMRI-ERIC (http://www.bbmri-eric.eu/services/common-service-elsi/). She is on the ethics committee of EIT Health and is a visiting scholar at the Sanger Welcome Trust Campus (Hinxton, UK; ) in the team of Dr. Anna Middleton.

Dr. Howard has an H-index of 23; has co-authored over 70 articles in international peer-reviewed journals and has won over 2.5 million Euros of funding from different national and European Funding agencies since 2004. As well as being an accomplished researcher, Dr. Howard is also a dedicated teacher, and above and beyond the regular lecturing she now does in Bioethics, has spent 6 years teaching (full time) Biology at the college level in Canada.

Dr. Howard received her doctoral degree in Human Molecular Genetics 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 (2008), and continued her training in Bioethics with the support of the European Commission FP7 Marie Curie Career Development Awards (2009-2011; 2011-2013) at KULeuven (Belgium), University of Basel (Switzerland) and inserm (France). In the autumn of 2013 she spent a semester as assistant professor at the Radboud University Medical Centre (Netherlands).

CV & publications (full list)

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.

Download our biobank and registry report

Biobank and registry ethics & law, report cover

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