Lista de obras - Pascal Borry - Dominio Público Uruguay

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

artículo científico publicado en 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

artículo científico publicado en 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

artículo científico publicado en 2015

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

artículo científico publicado en 2016

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

artículo científico publicado en 2009

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

artículo científico publicado en 2008

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

artículo científico publicado en 2014

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

artículo científico publicado en 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

artículo científico

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

artículo científico publicado en 2020

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

artículo científico publicado en 2022

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

artículo científico publicado en 2011

Attitudes of European Geneticists Regarding Expanded Carrier Screening

artículo científico publicado en 2016

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

artículo científico publicado en 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

artículo científico publicado en 2014

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

artículo científico publicado en 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

artículo científico publicado en 2007

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

artículo científico publicado en 2016

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

artículo científico publicado en 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

artículo científico publicado en 2006

Carrier testing in minors: conflicting views

Challenges of web-based personal genomic data sharing

artículo científico publicado en 2015

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

artículo científico publicado en 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

artículo científico publicado en 2009

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

artículo científico publicado en 2009

Consent insufficient for data release

artículo científico publicado en 2019

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

artículo científico publicado en 2016

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

artículo científico publicado en 2015

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

artículo científico

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

artículo científico publicado en 2022

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

artículo científico publicado en 2015

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.

artículo científico publicado en 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

artículo científico publicado en 2012

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

artículo científico publicado en 2013

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

artículo científico publicado en 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

artículo científico publicado en 2016

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

artículo científico publicado en 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

artículo científico publicado en 2006

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

artículo científico publicado en 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.

artículo científico publicado en 2006

Examining the role of informal interpretation in medical interviews

artículo científico publicado en 2009

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

artículo científico publicado en 2017

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

artículo científico publicado en 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

artículo científico publicado en 2015

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

artículo científico publicado en 2011

Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations

artículo científico publicado en 2009

Genetic testing: anonymity of sperm donors under threat

artículo científico publicado en 2013

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

artículo científico publicado en 2015

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

artículo científico publicado en 2017

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

artículo científico publicado en 2018

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

artículo científico publicado en 2017

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

artículo científico publicado en 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

artículo científico publicado en 2019

How international is bioethics? A quantitative retrospective study

artículo científico publicado en 2006

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

artículo científico publicado en 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

artículo científico publicado en 2014

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

artículo científico publicado en 2011

Italian appeal court: a genetic predisposition to commit murder?

artículo científico publicado en 2010

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

artículo científico publicado en 2016

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

artículo científico publicado en 2017

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

artículo científico publicado en 2017

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

artículo científico publicado en 2012

Letter to the Editor

artículo científico publicado en 2008

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

artículo científico publicado en 2016

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

artículo científico publicado en 2015

Medical Ethics, Use of Empirical Evidence in

article

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

artículo científico publicado en 2008

Minors and informed consent: a comparative approach

article

Moss, Lenny. What Genes Can't Do

article

Newspaper coverage of biobanks

artículo científico publicado en 2014

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

artículo científico publicado en 2017

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

artículo científico publicado en 2015

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

artículo científico publicado en 2018

Nonpropositional content in direct-to-consumer genetic testing advertisements

artículo científico publicado en 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

artículo científico publicado en 2017

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

artículo científico publicado en 2017

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

artículo científico publicado en 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

artículo científico publicado en 2016

Paternity testing under the cloak of recreational genetics.

artículo científico publicado en 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

artículo científico publicado en 2017

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

artículo científico publicado en 2014

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

artículo científico publicado en 2017

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

artículo científico publicado en 2011

Predictive genetic testing in minors for adult-onset genetic diseases

artículo científico publicado en 2008

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

artículo científico publicado en 2006

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

artículo científico publicado en 2014

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

artículo científico publicado en 2017

Raw Genomic Data: Storage, Access, and Sharing.

artículo científico publicado en 2017

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

artículo científico publicado en 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

artículo científico publicado en 2013

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

artículo científico publicado en 2013

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

artículo científico publicado en 2017

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

artículo científico publicado en 2018

Reply to C Harling

artículo científico publicado en 2017

Reply to Kranendonk et al.

artículo científico publicado en 2016

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

artículo científico publicado en 2017

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

artículo científico

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

artículo científico publicado en 2018

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

artículo científico publicado en 2017

Responsible implementation of expanded carrier screening

artículo científico publicado en 2016

Responsible implementation of expanded carrier screening

artículo científico publicado en 2017

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

artículo científico publicado en 2017

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

artículo científico publicado en 2014

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

artículo científico publicado en 2019

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

artículo científico publicado en 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

artículo científico publicado en 2019

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

artículo científico publicado en 2018

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

artículo científico publicado en 2012

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

artículo científico publicado en 2017

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

artículo científico publicado en 2012

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

Third party interpretation of raw genetic data: an ethical exploration

artículo científico publicado en 2017

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

artículo científico publicado en 2017

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

artículo científico publicado en 2012

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

artículo científico publicado en 2012

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

artículo científico publicado en 2017

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

artículo científico publicado en 2011

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

artículo científico publicado en 2008

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

artículo científico publicado en 2004

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

artículo científico publicado en 2010

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

artículo científico publicado en 2016

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

artículo científico publicado en 2013

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

artículo científico publicado en 2013

Whole-genome sequencing in newborn screening programs

artículo científico publicado en 2014

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

artículo científico publicado en 2015

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

artículo científico publicado en 2013

Lista de obras de Pascal Borry

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

"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

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

"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

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

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

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

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

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

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

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

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

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

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

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

Attitudes of European Geneticists Regarding Expanded Carrier Screening

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

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

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

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

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

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

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

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

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

Carrier testing in minors: conflicting views

Challenges of web-based personal genomic data sharing

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

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

Coming of age of personalized medicine: challenges ahead

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

Consent insufficient for data release

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

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

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

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

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

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

DTC Genetic Services: A Look Across the Pond

Data sharing platforms and the academic evaluation system

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

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

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

Developing Countries and Bioethical Research

Developing a policy for paediatric biobanks: principles for good practice

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

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

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

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

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

Empirical Ethics

Empirical research in bioethical journals. A quantitative analysis

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

Ethics Review in Anti-Doping Research: Experiences of Stakeholders

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.

Examining the role of informal interpretation in medical interviews

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

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

Forensic Epigenetic Age Estimation and Beyond: Ethical and Legal Considerations

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

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

Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations

Genetic testing: anonymity of sperm donors under threat

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

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

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

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

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

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

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

How international is bioethics? A quantitative retrospective study

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