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  1. Article ; Online: Will the European Health Data Space change data sharing rules?

    Shabani, Mahsa

    Science (New York, N.Y.)

    2022  Volume 375, Issue 6587, Page(s) 1357–1359

    Abstract: Questions of consent and public interest research loom large. ...

    Abstract Questions of consent and public interest research loom large.
    Language English
    Publishing date 2022-03-24
    Publishing country United States
    Document type Journal Article
    ZDB-ID 128410-1
    ISSN 1095-9203 ; 0036-8075
    ISSN (online) 1095-9203
    ISSN 0036-8075
    DOI 10.1126/science.abn4874
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  2. Article ; Online: The Data Governance Act and the EU's move towards facilitating data sharing.

    Shabani, Mahsa

    Molecular systems biology

    2021  Volume 17, Issue 3, Page(s) e10229

    Abstract: The implementation of the EU General Data Protection Regulation (GDPR) has had significant impacts on biomedical research, often complicating data sharing among researchers. The recently announced proposal for a new EU Data Governance Act is a promising ... ...

    Abstract The implementation of the EU General Data Protection Regulation (GDPR) has had significant impacts on biomedical research, often complicating data sharing among researchers. The recently announced proposal for a new EU Data Governance Act is a promising step towards facilitating data sharing, if it can interplay well with the GDPR.
    MeSH term(s) European Union ; Humans ; Information Dissemination ; Research Personnel ; Trust
    Language English
    Publishing date 2021-03-23
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2193510-5
    ISSN 1744-4292 ; 1744-4292
    ISSN (online) 1744-4292
    ISSN 1744-4292
    DOI 10.15252/msb.202110229
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: The Data Governance Act and the EU's move towards facilitating data sharing

    Mahsa Shabani

    Molecular Systems Biology, Vol 17, Iss 3, Pp n/a-n/a (2021)

    2021  

    Abstract: The implementation of the EU General Data Protection Regulation (GDPR) has had significant impacts on biomedical research, often complicating data sharing among researchers. The recently announced proposal for a new EU Data Governance Act is a promising ... ...

    Abstract The implementation of the EU General Data Protection Regulation (GDPR) has had significant impacts on biomedical research, often complicating data sharing among researchers. The recently announced proposal for a new EU Data Governance Act is a promising step towards facilitating data sharing, if it can interplay well with the GDPR.
    Keywords Biology (General) ; QH301-705.5 ; Medicine (General) ; R5-920
    Language English
    Publishing date 2021-03-01T00:00:00Z
    Publisher Wiley
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  4. Article ; Online: Reconciling diversity in health and genomic data collection with the regulation of AI in clinical genomics.

    McKibbin, Kyle J / Popejoy, Alice B / Shabani, Mahsa

    Genetics in medicine : official journal of the American College of Medical Genetics

    2024  , Page(s) 101127

    Language English
    Publishing date 2024-03-28
    Publishing country United States
    Document type Editorial
    ZDB-ID 1455352-1
    ISSN 1530-0366 ; 1098-3600
    ISSN (online) 1530-0366
    ISSN 1098-3600
    DOI 10.1016/j.gim.2024.101127
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  5. Article ; Online: Genomic Data as a National Strategic Resource: Implications for the Genomic Commons and International Data Sharing for Biomedical Research and Innovation.

    McKibbin, Kyle / Shabani, Mahsa

    The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics

    2023  Volume 51, Issue 2, Page(s) 301–313

    Abstract: This article provides a critical review of new policies in China, the United States, and the European Union that characterize genomic data as a national strategic resource. Specifically, we review policies that regulate human genomic data for economic, ... ...

    Abstract This article provides a critical review of new policies in China, the United States, and the European Union that characterize genomic data as a national strategic resource. Specifically, we review policies that regulate human genomic data for economic, national security, or other strategic purposes rather than ethical or individual rights purposes.
    MeSH term(s) Humans ; Genomics ; Biomedical Research ; European Union ; Policy ; Information Dissemination
    Language English
    Publishing date 2023-09-01
    Publishing country England
    Document type Review ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1168812-9
    ISSN 1748-720X ; 1073-1105 ; 0277-8459
    ISSN (online) 1748-720X
    ISSN 1073-1105 ; 0277-8459
    DOI 10.1017/jme.2023.77
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    Zs.A 2075: Show issues Location:
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  6. Article ; Online: Ethical and social reflections on the proposed European Health Data Space.

    Staunton, Ciara / Shabani, Mahsa / Mascalzoni, Deborah / Mežinska, Signe / Slokenberga, Santa

    European journal of human genetics : EJHG

    2024  

    Abstract: The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development ... ...

    Abstract The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the General Data Protection Regulation (GDPR). The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space.
    Language English
    Publishing date 2024-02-14
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/s41431-024-01543-9
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  7. Article ; Online: Reward systems for cohort data sharing: An interview study with funding agencies.

    Devriendt, Thijs / Shabani, Mahsa / Borry, Pascal

    PloS one

    2023  Volume 18, Issue 3, Page(s) e0282969

    Abstract: Data infrastructures are being constructed to facilitate cohort data sharing. These infrastructures are anticipated to increase the rate of data sharing. However, the lack of data sharing has also been framed as being the consequence of the lack of ... ...

    Abstract Data infrastructures are being constructed to facilitate cohort data sharing. These infrastructures are anticipated to increase the rate of data sharing. However, the lack of data sharing has also been framed as being the consequence of the lack of reputational or financial incentives for sharing. Some initiatives try to confer value onto data sharing by making researchers' individual contributions to research visible (i.e., contributorship) or by quantifying the degree to which research data has been shared (e.g., data indicators). So far, the role of downstream evaluation and funding distribution systems for reputational incentives remains underexplored. This interview study documents the perspectives of members of funding agencies on, amongst other elements, incentives for data sharing. Funding agencies are adopting narrative CVs to encourage evaluation of diverse research outputs and display diversity in researchers' profiles. This was argued to diminish the focus on quantitative indicators of scientific productivity. Indicators related to open science dimensions may be reintroduced if they are fully developed. Shifts towards contributorship models for research outputs are seen as complementary to narrative review.
    MeSH term(s) Humans ; Information Dissemination ; Motivation ; Drive ; Research Personnel ; Qualitative Research
    Language English
    Publishing date 2023-03-24
    Publishing country United States
    Document type Review ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2267670-3
    ISSN 1932-6203 ; 1932-6203
    ISSN (online) 1932-6203
    ISSN 1932-6203
    DOI 10.1371/journal.pone.0282969
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  8. Article ; Online: Conceptualizing fairness in the secondary use of health data for research: A scoping review.

    Cervera de la Cruz, Patricia / Shabani, Mahsa

    Accountability in research

    2023  , Page(s) 1–30

    Abstract: With the introduction of the European Health Data Space (EHDS), the secondary use of health data for research purposes is attracting more attention. Secondary health data processing promises to address novel research questions, inform the design of ... ...

    Abstract With the introduction of the European Health Data Space (EHDS), the secondary use of health data for research purposes is attracting more attention. Secondary health data processing promises to address novel research questions, inform the design of future research and improve healthcare delivery generally. To comply with the existing data protection regulations, the secondary data use must be fair, among other things. However, there is no clear understanding of what fairness means in the context of secondary use of health data for scientific research purposes. In response, we conducted a scoping review of argument-based literature to explore how fairness in the secondary use of health data has been conceptualized. A total of 35 publications were included in the final synthesis after abstract and full-text screening. Using an inductive approach and a thematic analysis, our review has revealed that balancing individual and public interests, reducing power asymmetries, setting conditions for commercial involvement, and implementing benefit sharing are essential to guarantee fair secondary use research. The findings of this review can inform current and future research practices and policy development to adequately address concerns about fairness in the secondary use of health data.
    Language English
    Publishing date 2023-10-18
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2069334-5
    ISSN 1545-5815 ; 0898-9621
    ISSN (online) 1545-5815
    ISSN 0898-9621
    DOI 10.1080/08989621.2023.2271394
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  9. Article ; Online: Lawfulness in secondary use of health data

    Mahsa Shabani / Sami Yilmaz

    Technology and Regulation, Vol

    2022  Volume 2022

    Abstract: In the recent years the importance of secondary uses of health data for clinical, research and policy making purposes has been further stressed in view of the availability of health-related data collected in traditional and non-traditional settings. ... ...

    Abstract In the recent years the importance of secondary uses of health data for clinical, research and policy making purposes has been further stressed in view of the availability of health-related data collected in traditional and non-traditional settings. However, processing health data - which are sensitive type of personal data - requires adopting adequate legal and ethical protections, to ensure that rights of the data subjects have been respected, while also facilitating responsible access to data. In this paper we aim to shed light on the interplay between the existing and emerging relevant European regulatory frameworks related to data processing, including the General Data Protection Regulation (GDPR), the upcoming Data Governance Act and the legislative proposal for European Health Data Space. In doing that, we will focus mainly on the legal bases for secondary uses of data in view of the overarching princi- ples of data protection.
    Keywords Health data ; privacy ; regulation ; research ; secondary uses ; Electronic computers. Computer science ; QA75.5-76.95
    Subject code 340
    Language English
    Publishing date 2022-12-01T00:00:00Z
    Publisher openjournals.nl
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  10. Article: Comorbidities of Major Depressive Disorder and Bipolar Disorders in Patients with Substance Use Disorder in Iran Psychiatric Hospital: A Cross-sectional Study.

    Oladikalarijani, Mahsa / Shabani, Amir / Soraya, Shiva / Ahmadkhaniha, Hamidreza

    Medical journal of the Islamic Republic of Iran

    2023  Volume 37, Page(s) 3

    Abstract: Background: Mood disorders are the most common psychiatric comorbidities in substance users. Mood disorders and substance use disorders are 2 intertwined processes in which treating one aid in treating the other. Depression and substance use disorder ... ...

    Abstract Background: Mood disorders are the most common psychiatric comorbidities in substance users. Mood disorders and substance use disorders are 2 intertwined processes in which treating one aid in treating the other. Depression and substance use disorder are now regarded as major mental health issues due to their widespread incidence. The study was designed to investigate the prevalence of major depressive disorder (MDD) and bipolar I and II disorders in patients with substance use disorder.
    Methods: The participants of this cross-sectional study were 320 patients with substance use disorder based on the DSM-5 (diagnostic and statistical manual of mental disorders 5th edition) criteria in Iran Psychiatric Hospital in 2020, who were assessed using the SCID-5-CV (Structured Clinical Interview for DSM-5 disorders-clinician version), and the demographic and clinical variables questionnaire considering familial and substance use history. The chi-square, Fisher, independent t test, and logistic regression were used to analyze the data.
    Results: Of the patients, 32.8% (n = 105) had mood disorders. The most common mood disorder was MDD (16.9%, n = 54), followed by bipolar I (12.5%, n = 40) and bipolar II (2.8%, n = 9) disorders. Methamphetamine was the most commonly used substance (47.5%, n = 152). Also, 62.5% (n = 200) of participants consumed 2 or more substances simultaneously. The chance of having a mood disorder in married and divorced patients was 2.12 and 2.04 times more than in single patients, respectively.
    Conclusion: The lifetime prevalence of bipolar I disorder in patients with substance use disorders is several times more than the general population, thus psychiatrists should pay more attention to mood comorbidities diagnosis and treatment in substance users.
    Language English
    Publishing date 2023-02-07
    Publishing country Iran
    Document type Journal Article
    ZDB-ID 1095990-7
    ISSN 1016-1430
    ISSN 1016-1430
    DOI 10.47176/mjiri.37.3
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