Centre for Research Ethics & Bioethics (CRB)

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

Biography

Dr. Howard is the ethics of Genomics Work Package leader of a H2020 SWAFs Project called SIENNA (3 million Euros, 2017-2021, studying the ethical, legal, and social issues (ELSI) of different technology areas including Genomics, Robotics/AI, and enhancement. She is also 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 & publicatoins (full list)

Recent publications

  • de Wert, Guido; Pennings, Guido; Clarke, Angus; Eichenlaub-Ritter, Ursula et al.

    Human germline gene editing: Recommendations of ESHG and ESHRE

    Part of European Journal of Human Genetics, p. 445-449, 2018.

  • De Wert, G.; Heindryckx, B.; Pennings, G.; Clarke, A. et al.

    Responsible innovation in human germline gene editing: Background document to the recommendations of ESHG and ESHRE

    Part of European Journal of Human Genetics, p. 450-470, 2018.

  • Kalokairinou, L; Howard, Heidi Carmen; Slokenberga, Santa; Fisher, E et al.

    Legislation of direct-to-consumer genetic testing in Europe:: a fragmented regulatory landscape

    Part of Journal of Community Genetics, p. 117-132, 2018.

  • Howard, Heidi Carmen; Mascalzoni, Deborah; Mabile, Laurence; Houeland, Gry et al.

    How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).

    Part of Journal of Community Genetics, p. 169-176, 2018.

  • Niemiec, E.; Vears, D. F.; Borry, P.; Howard, Heidi Carmen et al.

    Readability of informed consent forms for whole-exome and whole-genome sequencing

    Part of Journal of Community Genetics, p. 143-151, 2018.

  • Borry, Pascal; Bentzen, Heidi Beate; Budin-Ljøsne, Isabelle; Cornel, Martina C et al.

    The challenges of the expanded availability of genomic information: an agenda-setting paper.

    Part of Journal of Community Genetics, p. 103-116, 2018.

  • Hansson, Mats G.; Bouder, Frederic; Howard, Heidi Carmen

    Genetics and risk - an exploration of conceptual approaches to genetic risk

    Part of Journal of Risk Research, p. 101-108, 2018.

  • Howard, Heidi Carmen; van El, Carla G.; Forzano, Francesca; Radojkovic, D. et al.

    One small edit for humans, one giant edit for humankind? Points and questions to consider for a responsible way forward for gene editing in humans

    Part of European Journal of Human Genetics, p. 1-11, 2018.

  • Hansson, MG

    Genetics and risk–an exploration of conceptual approaches to genetic risk

    Part of Journal of Risk Research, p. 101 101-108 108, 2018.

  • Howard, Heidi Carmen; Iwarsson, Erik

    Mapping uncertainty in genomics

    Part of Journal of Risk Research, p. 117-128, 2018.

  • Niemiec, Emilia; Kalokairinou, Louiza; Howard, Heidi Carmen

    Current ethical and legal issues in health-related direct-to-consumer genetic testing

    Part of Personalized Medicine, p. 433-445, 2017.

  • Kalokairinou, L.; Howard, H. C.; Slokenberga, S.; Fisher, E. et al.

    Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape

    Part of J Community Genet, 2017.

  • Borry, P.; Bentzen, H. B.; Budin-Ljosne, I.; Cornel, M. C. et al.

    The challenges of the expanded availability of genomic information: an agenda-setting paper

    Part of J Community Genet, 2017.

  • Henneman, L.; Borry, P.; Chokoshvili, D.; Cornel, M. C. et al.

    Responsible implementation of expanded carrier screening

    Part of Eur J Hum Genet, p. 1291 1291-, 2017.

  • Middleton, A; Mendes, A; Benjamin, C; Howard, H.C. et al.

    Direct-to-consumer genetic testing: where and how does genetic counseling fit?

    Part of Personalized Medicine, p. 249 249-257 257, 2017.

  • Kalokairinou, Louiza; Borry, Pascal; Howard, Heidi Carmen

    Regulating the advertising of genetic tests in Europe: a balancing act

    Part of Journal of Medical Genetics, p. 651-656, 2017.

  • Middleton, Anna; Mendes, Alvaro; Benjamin, Caroline M.; Howard, Heidi Carmen et al.

    Direct-to-consumer genetic testing: where and how does genetic counseling fit?

    Part of Personalized Medicine, p. 249-257, 2017.

  • Niemiec, Emilia; Borry, Pascal; Pinxten, Wim; Howard, Heidi Carmen et al.

    Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies

    Part of Human Mutation, p. 1248-1256, 2016.

  • Henneman, L.; Borry, P.; Chokoshvili, D.; Cornel, M. C. et al.

    Responsible implementation of expanded carrier screening

    Part of Eur J Hum Genet, p. e1 e1-e12 e12, 2016.

  • Oliveri, S.; Howard, H. C.; Renzi, C.; Hansson, M. G. et al.

    Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

    Part of J Med Genet, p. 798 798-799 799, 2016.

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