Heidi C. Howard
Heidi C. Howard
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.
Phone: +46 18-471 61 70
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).
Ethical, legal and social issues of gene editing
Gene editing technology pushes genetics beyond diagnostic testing and into the realm of treatment. We address the ethical, legal and social issues associated.
Your DNA Your SAy
>> Tell us what you think
This is a film-survey experience on DNA and medical data sharing.
Technology, ethics and human rights
Genomics, Enhancement, AI & Robotics
The SIENNA project will address ethical issues in three new and emerging areas with major socio-economic impact.
ELSI Commmon Service for BBMRI-ERIC
BBMRI-ERIC aims to increase efficacy and excellence of European bio-medical research. We are part of the ELSI-common service.
Managing genetic risk information
Research generates huge amounts of genetic information. How should we handle it? That is what we are trying to find out in a large international research project.
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
Part of Human Genetics, 2019.
THE RIGHT TO SCIENCE AND HUMAN GERMLINE EDITING. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act
Part of Förvaltningsrättslig Tidskrift, p. 199-222, 2019.
Consenting Patients to Genome Sequencing
Part of Clinical Genome Sequencing: Psychological Considerations, 2019.
Reply to Bombard and Mighton
Part of European Journal of Human Genetics, p. 507-508, 2019.
Attitudes of publics who are unwilling to donate DNA data for research.
Part of European Journal of Medical Genetics, p. 316-323, 2019.
Moving towards a cure in genetics: what is needed to bring somatic gene therapy to the clinic?
Part of European Journal of Human Genetics, p. 484-487, 2019.
Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
Part of European Journal of Human Genetics, p. 169-182, 2019.
Analysis of VUS reporting, variant reinterpretation and recontact policies in clinical genomic sequencing consent forms
Part of European Journal of Human Genetics, p. 1743-1751, 2018.
How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings?: A content analysis
Part of Clinical Genetics, p. 321-329, 2018.
A response to the forensic genetics policy initiative's report "Establishing Best Practice for Forensic DNA Databases"
Part of Forensic Science International, p. E19-E21, 2018.
'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods
Part of Personalized Medicine, p. 311-318, 2018.
Genetics and risk - an exploration of conceptual approaches to genetic risk
Part of Journal of Risk Research, p. 101-108, 2018.
Genetics and risk–an exploration of conceptual approaches to genetic risk
Part of Journal of Risk Research, p. 101 101-108 108, 2018.
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.
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.
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.
Human germline gene editing: Recommendations of ESHG and ESHRE
Part of European Journal of Human Genetics, p. 445-449, 2018.
Readability of informed consent forms for whole-exome and whole-genome sequencing
Part of Journal of Community Genetics, p. 143-151, 2018.
Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape
Part of J Community Genet, 2017.
The challenges of the expanded availability of genomic information: an agenda-setting paper
Part of J Community Genet, 2017.
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.
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.