prof. Mahsa Shabani

Faculty of Law and Criminology > Department of Criminology, Penal Law and Social Law

Work address: Universiteitstraat 4
9000 Gent
Email: Mahsa.Shabani@UGent.be

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- Conference Paper
Processing health data and re-identifiability issues

Mahsa Shabani (UGent)

(2019)
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- Journal Article
- A1
- open access
DNA data marketplace : an analysis of the ethical concerns regarding the participation of the individuals

Eman Ahmed and Mahsa Shabani (UGent)

(2019) FRONTIERS IN GENETICS. 10.
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- Journal Article
- A1
Blockchain-based platforms for genomic data sharing : a de-centralized approach in response to the governance problems?

Mahsa Shabani (UGent)

(2019) JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION. 26(1). p.76-80
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- Journal Article
Re‐identifiability of genomic data and the GDPR

Mahsa Shabani (UGent) and Luca Marelli

(2019) EMBO reports.
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- Journal Article
Transparency and objectivity in governance of clinical trials data sharing: Current practices and approaches

Mahsa Shabani (UGent) and Mojisola Obasa

(2019) Clinical Trials. p.547-551
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- Journal Article
- open access
The use of samples originating from doping control procedures for research purposes : a qualitative study

Thijs Devriendt, Amicia Phillips, Mahsa Shabani (UGent) and Pascal Borry

(2019) JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS. 14(3). p.254-261
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- Miscellaneous
Are requirements to deposit data in research repositories compatible with the European Union's general data protection regulation?

Deborah Mascalzoni, Heidi Beate Bentzen, Isabelle Budin-Ljøsne, Lee Andrew Bygrave, Jessica Bell, Edward S. Dove, Christian Fuchsberger, Kristian Hveem, Michaela Th. Mayrhofer, Viviana Meraviglia, et al.

(2019) ANNALS OF INTERNAL MEDICINE. 170(5). p.332-335
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- Journal Article
- A1
Consent insufficient for data release

Dianne Nicol, Lisa Eckstein, Heidi Beate Bentzen, Pascal Borry, Mike Burgess, Wylie Burke, Don Chalmers, Mildred Cho, Edward Dove, Stephanie Fullerton, et al.

(2019) SCIENCE. 364(6439). p.445-446
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- Journal Article
- A1
- open access
Model consent clauses for rare disease research

Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kautmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani (UGent) , Eric Sid, et al.

(2019) BMC MEDICAL ETHICS. 20.
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- Miscellaneous
Forensic epigenetic age estimation and beyond : ethical and legal considerations

Mahsa Shabani (UGent) , Pascal Borry, Inge Smeers and Bram Bekaert

(2018) TRENDS IN GENETICS. 34(7). p.489-491
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- Journal Article
- A1
Variant data sharing by clinical laboratories through public databases : consent, privacy and further contact for research policies

Mahsa Shabani (UGent) , Stephanie O. M. Dyke, Luca Marelli and Pascal Borry

(2018) GENETICS IN MEDICINE. 21(5). p.1031-1037
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- Journal Article
- A1
Registered access : authorizing data access

Stephanie O. M. Dyke, Mikael Linden, Ilkka Lappalainen, Jordi Rambla De Argila, Knox Carey, David Lloyd, J. Dylan Spalding, Moran N. Cabili, Giselle Kerry, Julia Foreman, et al.

(2018) EUROPEAN JOURNAL OF HUMAN GENETICS. 26(12). p.1721-1731
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- Journal Article
- A2
- open access
The challenges of the expanded availability of genomic information : an agenda-setting paper

Pascal Borry, Heidi Beate Bentzen, Isabelle Budin-Ljøsne, Martina C. Cornel, Heidi Carmen Howard, Oliver Feeney, Leigh Jackson, Deborah Mascalzoni, Álvaro Mendes, Borut Peterlin, et al.

(2018) JOURNAL OF COMMUNITY GENETICS. 9(2). p.103-116
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- Book Chapter
Genetic testing in Europe : an overview of the legal framework

Dominique Sprumont , Pascal Borry and Mahsa Shabani (UGent)

(2017) European health law.
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- Journal Article
- A1
Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation

Mahsa Shabani (UGent) and Pascal Borry

(2017) EUROPEAN JOURNAL OF HUMAN GENETICS. 26(2). p.149-156
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- Journal Article
- A1
Oversight of genomic data sharing : what roles for ethics and data access committees?

Mahsa Shabani (UGent) , Edward Dove, Madeleine Murtagh, Bartha Knoppers and Pascal Borry

(2017) BIOPRESERVATION AND BIOBANKING. 15(5). p.469-474
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- Journal Article
- A1
Research ethics review for the use of anonymized samples and data : a systematic review of normative documents

Amicia Phillips, Pascal Borry and Mahsa Shabani (UGent)

(2017) ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE. 24(8). p.483-496
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- Miscellaneous
Raw genomic data : storage, access, and sharing

Mahsa Shabani (UGent) , Danya Vears and Pascal Borry

(2017) TRENDS IN GENETICS. 34(1). p.8-10
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- Journal Article
- A1
Registered access : a ‘Triple-A’ approach

Stephanie O M Dyke, Emily Kirby, Mahsa Shabani (UGent) , Adrian Thorogood, Kazuto Kato and Bartha M Knoppers

(2016) EUROPEAN JOURNAL OF HUMAN GENETICS. 24(12). p.1676-1680
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- Miscellaneous
Research ethics : ethics review for international data-intensive research : ad hoc approaches mix and match existing components

E. S. Dove, D. Townend, E. M. Meslin, M. Bobrow, K. Littler, D. Nicol, J. de Vries, A. Junker, C. Garattini, J. Bovenberg, et al.

(2016) SCIENCE. 351(6280). p.1399-1400
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- Journal Article
- A1
'You want the right amount of oversight' : interviews with data access committee members and experts on genomic data access

Mahsa Shabani (UGent) and Pascal Borry

(2016) GENETICS IN MEDICINE. 18(9). p.892-897
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- Journal Article
- A1
Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts

Mahsa Shabani (UGent) , Adrian Thorogood and Pascal Borry

(2016) EUROPEAN JOURNAL OF HUMAN GENETICS. 24(12). p.1671-1675
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- Miscellaneous
Compendium of Policy and Ethical Framework Umbilical Cord Blood (UCB) – Banking, research and Clinical Applications

Rosarie Isasi, Bartha Knoppers, Pascal Borry, Mahsa Shabani (UGent) and Herman Nys

(2015)
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- Journal Article
- A1
- open access
Controlled access under review : improving the governance of genomic data access

Mahsa Shabani (UGent) , Stephanie O. M. Dyke, Yann Joly and Pascal Borry

(2015) PLOS BIOLOGY. 13(12).
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- Book Chapter
Genomic databases, access review, and data access committees

Mahsa Shabani (UGent) , Bartha Knoppers and Pascal Borry

(2015) Medical and Health Genomics. p.29-35
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- Journal Article
- A2
- open access
Challenges of web-based personal genomic data sharing

Mahsa Shabani (UGent) and Pascal Borry

(2015) LIFE SCIENCE, SOCIETY AND POLICY. 11.
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- Miscellaneous
- open access
From the principles of genomic data sharing to the practices of data access committees

Mahsa Shabani (UGent) , Bartha Maria Knoppers and Pascal Borry

(2015) EMBO MOLECULAR MEDICINE. 7(5). p.507-509
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- Journal Article
- A1
- open access
A review of the key issues associated with the commercialization of biobanks

Timothy Caulfield, Sarah Burningham, Yann Joly, Zubin Master, Mahsa Shabani (UGent) , Pascal Borry, Allan Becker, Michael Burgess, Kathryn Calder, Christine Critchley, et al.

(2014) JOURNAL OF LAW AND THE BIOSCIENCES. 1(1). p.94-110
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- Journal Article
- A2
- open access
Is there a right time to know? The right not to know and genetic testing in children

Pascal Borry, Mahsa Shabani (UGent) and Heidi Howard

(2014) JOURNAL OF LAW, MEDICINE AND ETHICS. 42(1). p.19-27
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- Journal Article
- A1
Attitudes of research participants and the general public towards genomic data sharing : a systematic literature review

Mahsa Shabani (UGent) , Louize Bezuidenhout and Pascal Borry

(2014) EXPERT REVIEW OF MOLECULAR DIAGNOSTICS. 14(8). p.1053-1065
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- Journal Article
Nonpropositional content in direct-to-consumer genetic testing advertisements

Pascal Borry, Mahsa Shabani (UGent) and Heidi Howard

(2013) American Journal of Bioethics .

Academic Bibliography

prof. Mahsa Shabani

Processing health data and re-identifiability issues

DNA data marketplace : an analysis of the ethical concerns regarding the participation of the individuals

Blockchain-based platforms for genomic data sharing : a de-centralized approach in response to the governance problems?

Re‐identifiability of genomic data and the GDPR

Transparency and objectivity in governance of clinical trials data sharing: Current practices and approaches

The use of samples originating from doping control procedures for research purposes : a qualitative study

Are requirements to deposit data in research repositories compatible with the European Union's general data protection regulation?

Consent insufficient for data release

Model consent clauses for rare disease research

Forensic epigenetic age estimation and beyond : ethical and legal considerations

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

Registered access : authorizing data access

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

Genetic testing in Europe : an overview of the legal framework

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

Oversight of genomic data sharing : what roles for ethics and data access committees?

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

Raw genomic data : storage, access, and sharing

Registered access : a ‘Triple-A’ approach

Research ethics : ethics review for international data-intensive research : ad hoc approaches mix and match existing components

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

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

Compendium of Policy and Ethical Framework Umbilical Cord Blood (UCB) – Banking, research and Clinical Applications

Controlled access under review : improving the governance of genomic data access

Genomic databases, access review, and data access committees

Challenges of web-based personal genomic data sharing

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

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

Is there a right time to know? The right not to know and genetic testing in children

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

Nonpropositional content in direct-to-consumer genetic testing advertisements

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