Heidi Howard

Biographic Data

ID6695089
NAMEHeidi Howard
GIVEN NAMESHeidi
FAMILY NAMEHoward
SIGNATUREHOWARD H
AFFILIATIONSUppsala University
ORCID0000-0001-5256-7664
VERIFIEDYes
TOTAL WORKS11
TOTAL CITATIONS2
WORKS AS AUTHOR11
WORKS AS EDITOR0
FIRST PUBLICATION YEAR2010
LATEST PUBLICATION YEAR2020
H-INDEX1

  • Transparency, consent and trust in the use of customers' data by an online genetic testing company

    Open AccessA E Raz, Emilia Niemiec et al.ARTICLENew Genetics and Society2020

    23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitu…

  • Attitudes and experiences of European clinical geneticists towards direct-to-consumer genetic testing

    Open AccessLouiza Kalokairinou, Pascal Borry et al.ARTICLENew Genetics and Society2019

    Direct-to-consumer (DTC) genetic tests (GT) enable consumers to access a wide range of GT, without involving a healthcare professional, promoting an increasing disassociation of genetics from the clinical context. This study explores, through semi-structured interviews, the experiences and attitudes of European clinical geneticists towards DTCGT. Our results indicate that the participants have limited experience of consultations with patients reg…

  • How to responsibly acknowledge research work in the era of big data and biobanks

    Open AccessHeidi Howard, Heidi Carmen Howard et al.ARTICLEJournal of Community Genetics2017

    Currently, a great deal of biomedical research in fields such as epidemiology, clinical trials and genetics is reliant on vast amounts of biological and phenotypic information collected and assembled in biobanks. While many resources are being invested to ensure that comprehensive and well-organised biobanks are able to provide increased access to, and sharing of biomedical samples and information, many barriers and challenges remain to such resp…

  • The challenges of the expanded availability of genomic information

    Open AccessPascal Borry, Heidi Beate Bentzen et al.ARTICLEJournal of Community Genetics2017

    Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals' direct access to their genomic data. The expanded availability of genomic da…

  • Legislation of direct-to-consumer genetic testing in Europe

    Open AccessLouiza Kalokairinou, Heidi Howard et al.ARTICLEJournal of Community Genetics2017

    Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland…

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

    Open AccessEmilia Niemiec, Danya F Vears et al.ARTICLEJournal of Community Genetics2017

    Whole-exome and whole-genome sequencing (WES, WGS) can generate an unprecedented amount of complex information, making the informed consent (IC) process challenging. The aim of our study was to assess the readability of English IC forms for clinical whole-exome and whole-genome sequencing using the SMOG and Flesch-Kincaid formulas. We analysed 36 forms, most of which were from US providers. The median readability grade levels were 14.75 (the SMOG…

  • Mapping uncertainty in genomics

    Heidi Howard, Heidi Carmen Howard et al.ARTICLEJournal of Risk Research2017Cited by: 2

    The relatively novel and dynamic science of genomics holds many unknowns for stakeholders, and in particular for researchers and clinicians, as well as for participants and patients. At a time when many authors predict a future in which genomic medicine will be the norm, it is particularly relevant to discuss the unknowns surrounding genetics and genomics, including the notions of risk and uncertainty. This article will present a discussion regar…

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

    Mats G Hansson, Margareta Hansson et al.ARTICLEJournal of Risk Research2017References: 1

  • Is there a doctor in the house

    Open AccessHeidi Howard, Heidi Carmen Howard et al.ARTICLEJournal of Community Genetics2011

  • Users’ motivations to purchase direct-to-consumer genome-wide testing

    Open AccessYeyang Su, Heidi Howard et al.ARTICLEJournal of Community Genetics2011

  • Where are you going, where have you been

    Open AccessPascal Borry, Martina C Cornel et al.ARTICLEJournal of Community Genetics2010

    In recent years, various private companies have been marketing and offering genetic tests directly to consumers. This article reviews the recent history of this commercial phenomenon. In particular, we discuss and describe the following subjects: (1) the factors that allowed for the creation of the direct-to-consumer (DTC) genetic testing (GT) market; (2) information regarding the size and potential success or failure of the DTC GT market; (3) re…