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List of works by Pascal Borry

"I prefer a child with …": designer babies, another controversial patent in the arena of direct-to-consumer genomics

scientific article published on 3 October 2013

"It's our DNA, we deserve the right to test!" A content analysis of a petition for the right to access direct-to-consumer genetic testing

scientific article published on 01 September 2013

"Trust is not something you can reclaim easily": patenting in the field of direct-to-consumer genetic testing

scientific article published on 22 November 2012

"You hoped we would sleep walk into accepting the collection of our data": controversies surrounding the UK care.data scheme and their wider relevance for biomedical research

scientific article published on 18 August 2015

"You want the right amount of oversight": interviews with data access committee members and experts on genomic data access

scientific article

'Nobody tosses a dwarf!' The relation between the empirical and the normative reexamined.

scientific article published on May 2009

A proposal for a model of informed consent for the collection, storage and use of biological materials for research purposes

scientific article published on 19 February 2008

A review of the key issues associated with the commercialization of biobanks

scientific article (publication date: March 2014)

A systematic analysis of online marketing materials used by providers of expanded carrier screening

scientific article published on 14 December 2017

AUTHOR, CONTRIBUTOR OR JUST A SIGNER? A QUANTITATIVE ANALYSIS OF AUTHORSHIP TRENDS IN THE FIELD OF BIOETHICS

article

Analysis of VUS reporting, variant reinterpretation and recontact policies in clinical genomic sequencing consent forms

scientific article published on 24 August 2018

Anonymity 2.0: direct-to-consumer genetic testing and donor conception

scientific article published on 02 January 2014

Anti-doping research and the Helsinki Declaration: (mis)match?

scientific article published on 20 March 2020

Appropriate inclusion of adult research participants with intellectual disability: an in-depth review of guidelines and policy statements

scientific article published on 7 September 2022

Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?

scientific article

Attitudes of European Geneticists Regarding Expanded Carrier Screening

scientific article published on 19 November 2016

Attitudes of cystic fibrosis patients and parents toward carrier screening and related reproductive issues

scientific article published on 29 July 2015

Attitudes of cystic fibrosis patients and their parents towards direct-to-consumer genetic testing for carrier status

scientific article published on 01 March 2015

Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature.

scientific article published on 29 December 2012

Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

scientific article (publication date: November 2014)

Attitudes regarding carrier testing in incompetent children: a survey of European clinical geneticists

scientific article published on 22 August 2007

Attitudes regarding predictive genetic testing in minors: A survey of European clinical geneticists

Attitudes towards predictive genetic testing in minors for familial breast cancer: a systematic review

scientific article published on 5 June 2007

Biohistorical materials and contemporary privacy concerns-the forensic case of King Albert I.

scientific article published on 22 July 2016

Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects

scientific article published on 16 July 2010

Carrier screening: look before you leap: Carrier screening for type 1 Gaucher disease: difficult questions

Carrier testing in minors: a systematic review of guidelines and position papers

scientific article

Carrier testing in minors: conflicting views

Challenges of web-based personal genomic data sharing

scientific article

Clinicians' attitude towards family planning and timing of diagnosis in autosomal dominant polycystic kidney disease

scientific article published on 29 September 2017

Closure of population biobanks and direct-to-consumer genetic testing companies

scientific article published on 26 June 2011

Coming of age of personalized medicine: challenges ahead

scientific article published on 24 November 2009

Conference Scene: Direct-to-consumer genetic testing in the age of personalized medicine

scientific article published on 01 November 2009

Consent insufficient for data release

scientific article published on 01 May 2019

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

scientific article

Controlled Access under Review: Improving the Governance of Genomic Data Access

scientific article

Could minors be living kidney donors? A systematic review of guidelines, position papers and reports

scientific article published on 08 April 2013

Credit and Recognition for Contributions to Data-Sharing Platforms Among Cohort Holders and Platform Developers in Europe: Interview Study

scientific article published on 13 January 2022

Crowdsourced direct-to-consumer genomic analysis of a family quartet

scientific article

Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy

article

DTC Genetic Services: A Look Across the Pond

Data sharing platforms and the academic evaluation system

scientific article published on 12 July 2020

Data sharing platforms: instruments to inform and shape science policy on data sharing?

scientific article published in 2022

Debating the clinical utility of direct-to-consumer genetic testing for addiction susceptibility

scientific article published in December 2012

Designing expanded carrier screening panels: results of a qualitative study with European geneticists

scientific article published on 13 October 2016

Developing Countries and Bioethical Research

scholarly article by Pascal Borry et al published 25 August 2005 in The New England Journal of Medicine

Developing a policy for paediatric biobanks: principles for good practice

scientific article

Direct-to-consumer genetic testing - where should we focus the policy debate?

scientific article published on 01 May 2013

Direct-to-consumer genetic testing: more questions than benefits?

scientific article published on 01 July 2008

Direct-to-consumer genetic testing: regulating offer or use?

Direct-to-consumer genome scanning services. Also for children?

Direct-to-consumer pharmacogenomic testing

Do It Yourself Newborn Screening

scientific article published on 01 June 2016

Do athletes have a right to access data in their Athlete Biological Passport?

scientific article published on 20 April 2018

Donation after uncontrolled cardiac death (uDCD): a review of the debate from a European perspective

scientific article published on January 2008

Empirical Ethics

Empirical research in bioethical journals. A quantitative analysis

scientific article

Ethical considerations for genetic testing in the context of mandated cardiac screening before athletic participation

scientific article published on 22 September 2016

Ethics Review in Anti-Doping Research: Experiences of Stakeholders

scientific article published on 10 February 2020

Europe and direct-to-consumer genetic tests

Europe to ban direct-to-consumer genetic tests?

Evidence-based medicine and its role in ethical decision-making

scientific article

Examining the role of informal interpretation in medical interviews

scientific article

Expanded carrier screening for monogenic disorders: where are we now?

scientific article

Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers

scientific article published in 2021

Forensic Epigenetic Age Estimation and Beyond: Ethical and Legal Considerations

scientific article published on 16 April 2018

From the principles of genomic data sharing to the practices of data access committees

scientific article

Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities. Background Document to the ESHG recommendations on genetic testing and common disorders

scientific article

Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations

scientific article

Genetic testing: anonymity of sperm donors under threat

scientific article published in April 2013

Genome-based newborn screening: a conceptual analysis of the best interests of the child standard

scientific article published on 03 September 2015

Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

scientific article published on 24 October 2017

Geolocalisation of athletes for out-of-competition drug testing: ethical considerations. Position statement by the WADA Ethics Panel.

scientific article

Growing complexity of (expanded) carrier screening: Direct-to-consumer, physician-mediated, and clinic-based offers

scientific article published on 16 February 2017

Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors

scientific article published on 02 June 2009

How do consent forms for diagnostic high-throughput sequencing address unsolicited and secondary findings? A content analysis

scientific article published on 08 July 2018

How does carrier status for recessive disorders influence reproductive decisions? A systematic review of the literature

scientific article published on 14 November 2019

How international is bioethics? A quantitative retrospective study

scientific article

Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders' Perspectives: Systematic Review

scientific article published on 08 October 2020

Industry involvement in publicly funded biobanks

International survey on attitudes toward ethics in health technology assessment: An exploratory study

scholarly article by Luis E Arellano et al published January 2011 in International Journal of Technology Assessment in Health Care

Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children

scientific article published in March 2014

Is there a doctor in the house? : The presence of physicians in the direct-to-consumer genetic testing context

scientific article published on 6 September 2011

Italian appeal court: a genetic predisposition to commit murder?

scientific article published on 10 March 2010

Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing

scientific article published on 15 June 2016

Legal approaches regarding health-care decisions involving minors: implications for next-generation sequencing

scientific article published on May 2017

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

scientific article published on 18 November 2017

Legislation on direct-to-consumer genetic testing in seven European countries

scientific article

Letter to the Editor

scientific article published on 01 September 2008

Living Organ Donation by Minors: An Analysis of the Regulations in European Union Member States

scientific article published on 12 May 2016

Marginally scientific? Genetic testing of children and adolescents for lifestyle and health promotion

scientific article

Medical Ethics, Use of Empirical Evidence in

article

Minors and informed consent in carrier testing: a survey of European clinical geneticists

scientific article published on 01 May 2008

Minors and informed consent: a comparative approach

article

Moss, Lenny. What Genes Can't Do

article

Newspaper coverage of biobanks

scientific article

Newspaper coverage of human-pig chimera research: A qualitative study on select media coverage of scientific breakthrough.

scientific article

Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening

scientific article

Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening

article

Non-invasive prenatal testing for aneuploidy and beyond: challenges of responsible innovation in prenatal screening. Summary and recommendations

Noninvasive prenatal testing: a survey of young (future) parents in Flanders

scientific article published on 01 January 2018

Nonpropositional content in direct-to-consumer genetic testing advertisements

scientific article published in January 2013

Old Challenges or New Issues? Genetic Health Professionals' Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing

scientific article published on 05 October 2020

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

scientific article published on 30 November 2017

Oversight of Genomic Data Sharing: What Roles for Ethics and Data Access Committees?

scientific article

Participants' Accounts on Their Decision to Join a Cohort Study With an Attached Biobank: A Qualitative Content Analysis Study Within Two German Studies

scientific article published on 4 July 2016

Participants' decision to enroll in cohort studies with biobanks: quantitative insights from two German studies

article

Participation of Children in Medical Decision-Making: Challenges and Potential Solutions

scientific article

Paternity testing under the cloak of recreational genetics.

scientific article published on 8 March 2017

Patient rights in EU Member States after the ratification of the Convention on Human Rights and Biomedicine

Personal Genome Testing: Do You Know What You Are Buying?

Points to consider for laboratories reporting results from diagnostic genomic sequencing

scientific article published on 28 November 2017

Points to consider for prioritizing clinical genetic testing services: a European consensus process oriented at accountability for reasonableness

scientific article

Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists' views

scientific article

Preconceptional genetic carrier testing and the commercial offer directly-to-consumers

scientific article

Predictive genetic testing in minors for adult-onset genetic diseases

scientific article

Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers

scientific article

Psychosocial impact of pediatric living-donor kidney and liver transplantation on recipients, donors, and the family: a systematic review.

scientific article

Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium

scientific article

Raw Genomic Data: Storage, Access, and Sharing.

scientific article published on 10 November 2017

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

scientific article published on 31 August 2017

Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory

Recontacting Pediatric Research Participants for Consent When They Reach the Age of Majority

Reflecting on earlier experiences with unsolicited findings: points to consider for next-generation sequencing and informed consent in diagnostics

scientific article

Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate

scientific article (publication date: November 2013)

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

scientific article

Renal Replacement Therapy in children with severe developmental disability: guiding questions for decision-making

scientific article published on 07 September 2018

Reply to C Harling

scientific article published on 31 May 2017

Reply to Kranendonk et al.

scientific article published on 23 November 2016

Reporting practices for unsolicited and secondary findings from next-generation sequencing technologies: Perspectives of laboratory personnel

scientific article published on 16 May 2017

Reporting practices for variants of uncertain significance from next generation sequencing technologies

scientific article published on 31 July 2017

Reproductive autonomy in expanded carrier screening: more than meets the eye?

scientific article published on 08 November 2018

Research ethics review for the use of anonymized samples and data: A systematic review of normative documents.

scientific article published in January 2017

Responsible implementation of expanded carrier screening

scientific article published on 16 March 2016

Responsible implementation of expanded carrier screening

scientific article published on November 2017

Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation.

scientific article published on 29 November 2017

Science and Regulation. Changes on the horizon for consumer genomics in the EU

scientific article

Should minors and young adults qualify as potential live kidney donors? The views of international transplant professionals

scientific article published on 20 June 2019

Survey of European clinical geneticists on awareness, experiences and attitudes towards direct-to-consumer genetic testing

scientific article published on 22 May 2013

THE BIRTH OF THE EMPIRICAL TURN IN BIOETHICS

scholarly article by Pascal Borry et al published February 2005 in Bioethics

The Use of Samples Originating From Doping Control Procedures for Research Purposes: A Qualitative Study

scientific article published on 22 May 2019

The author who wasn't there? Fairness and attribution in publications following access to population biobanks.

scientific article

The challenge of implementing genetic tests with clinical utility while avoiding unsound applications

scientific article published on 9 October 2012

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

scientific article published on 26 September 2017

The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe

scientific article published on 28 March 2012

The expansion of newborn screening: is reproductive benefit an appropriate pursuit?

Third party interpretation of raw genetic data: an ethical exploration

scientific article

Time out: ethical reflections on medical disqualification of athletes in the context of mandated pre-participation cardiac screening

scientific article published on 11 October 2017

To ban or not to ban? Clinical geneticists' views on the regulation of direct-to-consumer genetic testing

scientific article

To ban or not to ban?: Clinical geneticists' views on the regulation of direct-to-consumer genetic testing.

scientific article published on 18 September 2012

Unsolved challenges in pediatric whole-exome sequencing: A literature analysis

scientific article

Users' motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories

scientific article

Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies

scientific article published on 08 October 2018

What are the limits of the duty of care? The case of clinical genetics

scientific article published on 01 March 2008

What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis

scientific article published in January 2004

Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market

scientific article

Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts

scientific article

Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics

scientific article

Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics

scientific article

Whole-genome sequencing in newborn screening programs

scientific article published on 01 March 2014

Whole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes

scientific article published on 28 January 2015

Why do participants enroll in population biobank studies? A systematic literature review

scientific article published on January 2013

Why eight EU Member States signed, but not yet ratified the Convention for Human Rights and Biomedicine

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