Genetic Privacy and Other Interests in Biobanking

2021 ◽  
pp. 40-66
Author(s):  
Dara Hallinan
Keyword(s):  
Genetic Data ◽  
Research Process ◽  
Third Party ◽  
Privacy Rights ◽  
Research Subjects ◽  
Genetic Privacy ◽  
Genetic Groups ◽  
Rights And Interests

This chapter evaluates the concept of genetic privacy and its relationship with biobanking. Genetic privacy is simply a sub-concept of privacy referring to states of separation and exclusivity arising in relation to the processing of genetic data. Genetic privacy rights, then, are simply a subset of privacy rights relating to the processing of genetic data. The chapter then proceeds to map the range of genetic privacy rights engaged by the biobanking process along two axes: the transactional axis—genetic privacy rights held by research subjects; and the relational axis—genetic privacy right held by genetic relatives and genetic groups. Subsequently, it moves to map other types of interests engaged by biobanking, including interests related to the research process and third-party non-research interests in accessing biobank substances. Finally, the chapter offers a rough schematic of the relationships, including conflicts and confluences, between identified rights and interests.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

Future uncertainties for preserving tweets: Peoples’ perceptions in Japan

2021 ◽  
pp. 096100062110373
Author(s):  
Ryo Shiozaki
Keyword(s):  
Social Media ◽  
State Intervention ◽  
Third Party ◽  
Media Content ◽  
Privacy Rights ◽  
The Public ◽  
Logistic Analysis ◽  
Hypothetical Scenario ◽  
Questionnaire Surveys ◽  
National Libraries

Social media content includes an unprecedented number of personal documents reflecting our time. Few countries or regions have established legal grounds for securing long-term access to these documents, while paper-based publications have been exhaustively accumulated under legal deposit systems. However, archiving social media through national libraries, as a sort of state intervention, could bring about chilling effects on free speech in unexpected ways. The article aims to present empirical data of public concerns concerning social media content, focusing on Twitter’s public tweets archived by third parties, through two questionnaire surveys involving university students (Research I) and the public (Research II). The surveys were designed based on three settings: researchers, organisations to which the respondents belong and the National Diet Library in Japan. Consequently, approximately 30% and 47% of the respondents in Research I ( n = 197) and II ( n = 728), respectively, disagreed with any hypothetical scenario. An ordered logistic analysis to reveal the inter-relations of variables suggests the existence of other factors; thus, neither variables related to Twitter/Internet use nor demographic variables influenced people’s perceptions of the archival issue. While protecting privacy rights and copyrights was the primary reason for disagreements regarding third-party archival of tweets, many respondents intuitively displayed a negative reaction without any specific reason. Those who question its value and feel uncomfortable with an authoritative intervention were also identified. To nurture acceptant attitudes, advocating the archival of personal documents and adopting more restrictive archival procedures like taking down posts and anonymisation, public debates on the intervention of public bodies and demonstration of archival values should be considered.

scholarly journals Third party interpretation of raw genetic data: an ethical exploration

2017 ◽  
Vol 25 (11) ◽  
pp. 1189-1194 ◽  
Author(s):  
Lauren Badalato ◽  
Louiza Kalokairinou ◽  
Pascal Borry
Keyword(s):  
Genetic Data ◽  
Third Party

Protecting Genetic Privacy in Biobanking through Data Protection Law

2021 ◽  
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Infrastructure ◽  
Legal Framework ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
Research Biobanks ◽  
The Subject ◽  
Data Protection Law

Biobanks are critical infrastructure for medical research. Biobanks, however, are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of genomic data, questions have emerged as to how genetic privacy should be protected. What types of genetic privacy rights and rights holders should be protected and to what extent? Since 25 May 2018, the General Data Protection Regulation (GDPR) has applied and now occupies a key position in the European legal framework for the regulation of biobanking. This book takes an in-depth look at the function, problems, and opportunities presented by European data protection law under the GDPR as a framework for the protection of genetic privacy in biobanking. It argues that the substantive framework presented by the GDPR already offers an admirable baseline level of protection for the range of genetic privacy rights engaged by biobanking. The book further contends that while numerous problems with this standard of protection are indeed identifiable, the GDPR offers the flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to realise these solutions.

Genetic Privacy

2019 ◽  
pp. 713-730
Author(s):  
Elsa Supiot ◽  
Margo Bernelin
Keyword(s):  
European Union ◽  
Data Protection ◽  
Privacy Protection ◽  
Technological Development ◽  
Genetic Data ◽  
Legal Framework ◽  
The European Union ◽  
Genetic Privacy ◽  
Data Protection Directive ◽  
Health Related

This chapter analyzes the European Union framing of the protection of genetic privacy in the context of the European Commission's 2012 proposal to amend the 95/46/EC Data Protection Directive. This market-driven proposal, fitting a wider European movement with regard to health-related legal framework, takes into account the challenges to privacy protection brought by rapid technological development. Although the proposal is an attempt to clarify the 1995 Data Protection Directive, including the question of genetic data, it also creates some controversial grey areas, especially concerning the extensive regulatory role to be played by the European Commission. With regard to genetic privacy, this chapter takes the opportunity to develop on this paradox, and gives an analysis of the European design on the matter.

The Protection of Genetic Privacy in Biobanking at International Level

2021 ◽  
pp. 67-90
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Analysis ◽  
Baseline Level ◽  
International Level ◽  
Legal Systems ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
International Instruments

This chapter sketches a baseline level of protection for genetic privacy rights in biobanking, against which legal systems, including the General Data Protection Regulation (GDPR), might be compared. This baseline level of protection is provided via identifying principles dealing with the protection of all types of genetic privacy rights, and rights holders, in biobanking in the international framework. The chapter identifies two types of international principles: common international principles—principles identified in a majority of all biobank-relevant international instruments; and emerging international principles—principles identifiable in a majority of biobank-specific international instruments. It also offers a critical analysis of the protection offered under the international framework. This critique does not aim to undermine the legitimacy of regarding identified international principles as offering a baseline level of protection. Rather, it merely aims to highlight that the protection provided has flaws, and thus should not be regarded as definitive or perfect.

Testing the GDPR in Relation to Biobanking

2021 ◽  
pp. 129-147
Author(s):  
Dara Hallinan
Keyword(s):  
Personal Data ◽  
Genomic Data ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
Health Lifestyle ◽  
Processing Operation ◽  
Processing Activity ◽  
General Data ◽  
Individual Research Results

This chapter looks at when the General Data Protection Regulation (GDPR) applies, rationae materiae, to biobanking—only when the law applies to biobanking can it be expected to provide any protection for genetic privacy rights in biobanking at all. The GDPR's applicability criteria are outlined in Article 2; criteria concern both the types of processing activity covered by the GDPR and the mechanics of processing covered by the GDPR. In relation to the mechanics of biobank processing, the situation is complex. The key question which emerges is which types of biobanking substances can qualify as personal data? The concept of personal data can be usefully broken down into two aspects of any processing operation. First, the substance being processed: to qualify as personal data, a substance must be able to fulfil three criteria. A substance must be ‘information’, it must ‘relate to’ a specific person, and that person must be a ‘natural person’. In the biobanking context, health, lifestyle, and biographical information, sequenced genomic data, and individual research results certainly fulfil these criteria. Second, the link between the substance and a specific individual: to qualify as personal data, a substance must relate to an individual who is ‘identified or identifiable’. All biobanking substances processed in either linked or pseudonymised form will certainly qualify as ‘identified or identifiable’.

scholarly journals Credit for and Control of Research Outputs in Genomic Citizen Science

2020 ◽  
Vol 21 (1) ◽  
pp. 465-489
Author(s):  
Christi J. Guerrini ◽  
Jorge L. Contreras
Keyword(s):  
Citizen Science ◽  
Scientific Discovery ◽  
Personal Data ◽  
Genetic Data ◽  
Biomedical Sciences ◽  
Research Subjects ◽  
Human Genomics ◽  
The Public ◽  
Legal Foundations ◽  
And Control

Citizen science encompasses activities with scientific objectives in which members of the public participate as more than passive research subjects from whom personal data or biospecimens are collected and analyzed by others. Citizen science is increasingly common in the biomedical sciences, including the fields of genetics and human genomics. Genomic citizen science initiatives are diverse and involve citizen scientists in collecting genetic data, solving genetic puzzles, and conducting experiments in community laboratories. At the same time that genomic citizen science is presenting new opportunities for individuals to participate in scientific discovery, it is also challenging norms regarding the manner in which scientific research outputs are managed. In this review, we present a typology of genomic citizen science initiatives, describe ethical and legal foundations for recognizing genomic citizen scientists’ claims of credit for and control of research outputs, and detail how such claims are or might be addressed in practice across a variety of initiatives.

scholarly journals Genetic Data Privacy Solutions in the GDPR

2019 ◽  
Vol 7 (1) ◽  
pp. 269-297 ◽  
Author(s):  
Kristi Harbord
Keyword(s):  
Data Privacy ◽  
Large Scale ◽  
Genetic Data ◽  
Health Data ◽  
Genetic Privacy ◽  
Private Companies ◽  
Privacy Concerns ◽  
Direct To Consumer ◽  
Consumer Data ◽  
Doctor's Office

The intersection of healthcare and technology is a rapidly growing area. One thriving field at this intersection involves obtaining, processing, and storing genetic data. While the benefits have been great, genetic information can reveal a great deal about individuals and their families. And the information that can be conveyed from genetic data appears limitless and is constantly growing and changing. Many entities have begun storing, processing, and sharing genetic data on a very large scale. This creates many privacy concerns that the current regulatory framework does not account for. The line between patient data and consumer data is blurred; many entities are interested in obtaining genetic data with varied interests. In the direct-to-consumer genetic testing market, consumers pay to send private companies their DNA samples in exchange for a trivial amount of information about their ancestry and health risks. But health data obtained and processed by a company are subjected to far less stringent privacy regulations than health data obtained and processed at a doctor’s office or hospital. This Comment summarizes some of the current genetic privacy problems in United States laws and examines the EU’s recently adopted GDPR for a possible solution. A GDPR-style regulation could provide more consistency, give individuals more control, and protect against future unknown uses.

scholarly journals Gatekeepers in Agricultural Extension Research: A Retrospective Analysis

2020 ◽  
Vol 27 (4) ◽  
pp. 94-110
Author(s):  
Fallys Masambuka-Kanchewa ◽  
Kevan Lamm ◽  
Alexa Lamm
Keyword(s):  
Rural Communities ◽  
Social Science ◽  
Critical Role ◽  
Social Science Research ◽  
Science Research ◽  
Research Process ◽  
Policy Formulation ◽  
Sub Saharan Africa ◽  
Research Subjects ◽  
Social Scientists

Social science research plays an important role in transforming agriculture as it provides an invaluable source of information for policy formulation and implementation. Social scientists collecting data in rural communities, where the majority of agricultural production occurs, around the globe frequently pass through a layer of gatekeepers to access research communities and subjects. Gatekeepers serve a critical role in access to subjects but their influence on the research process in many countries and contexts has not been examined thoroughly. The findings of this phenomenology study, conducted in four Sub-Saharan Africa countries, indicated gatekeepers provide invaluable access to individuals and perspectives that may otherwise be inaccessible. However, the findings indicated gatekeepers may also have a vested interests in the research being conducted. Among others, gatekeepers may introduce selection bias to the research process. Therefore, it is important for social scientists working in countries where gatekeepers are involved in the research process to understand the limitations gatekeepers introduce when conducting social science research. Having such knowledge is necessary when interpreting research results and will help researchers be cognizant of the power dynamics that may exist between gatekeepers and those they represent as well as implications on the research process. Keywords: Gatekeepers, social science research, objectivity, power structures, extension, access, research subjects

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