Heidi C. Howard
Heidi C. Howard
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.
Phone: +46 18-471 61 70
Citizen health in genomics
We are part of CHIP ME, a community of researchers and stakeholders to promote public-private initiatives in public health genomics.
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.
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.
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.
News from the SIENNA project
- Journal of Risk Research, . vol. 21, ss. 117-128 DOI
- Journal of Community Genetics DOI
- Journal of Medical Genetics, vol. 54, ss. 651-656 DOI
- Personalized Medicine, . vol. 14, ss. 249-257 DOI Download fulltext
- European Journal of Human Genetics, vol. 24, ss. E1-E12 DOI
Content Analysis of Informed Consent for Whole Genome Sequencing Offered by Direct-to-Consumer Genetic Testing Companies.(2016). Human Mutation, vol. 37, ss. 1248-1256 DOI
- APPLIED AND TRANSLATIONAL GENOMICS, vol. 8, ss. 23-30 DOI Download fulltext
Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?.(2016). Journal of Medical Genetics, vol. 53, ss. 798-799 DOI
Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening.(2015). European Journal of Human Genetics, vol. 23, ss. 1438-1450 DOI
Whole-genome sequencing in newborn screening?: A statement on the continued importance of targeted approaches in newborn screening programmes.(2015). European Journal of Human Genetics, vol. 23, ss. 1593-1600 DOI
Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness.(2015). European Journal of Human Genetics, vol. 23, ss. 729-735 DOI
- Fertility and Sterility, vol. 101, ss. 630-2 DOI
- Science, vol. 346, ss. 296-298 DOI
- Baillière's Best Practice & Research, vol. 28, ss. 269-279 DOI
- Nature, vol. 496, ss. 169- DOI
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.