scholarly journals Secondary Data Usage in Direct-to-Consumer Genetic Testing: To What Extent Are Customers Aware and Concerned?

2021 ◽  
pp. 1-8
Author(s):  
Janessa Mladucky ◽  
Bonnie Baty ◽  
Jeffrey Botkin ◽  
Rebecca Anderson
Keyword(s):  
Genetic Testing ◽  
Secondary Data ◽  
Structured Interviews ◽  
Customer Data ◽  
Secondary Use ◽  
Data Usage ◽  
Direct To Consumer ◽  
New Information ◽  
Opt Out ◽  
Potential Risks

Introduction: Customer data from direct-to-consumer genetic testing (DTC GT) are often used for secondary purposes beyond providing the customer with test results. Objective: The goals of this study were to determine customer knowledge of secondary uses of data, to understand their perception of risks associated with these uses, and to determine the extent of customer concerns about privacy. Methods: Twenty DTC GT customers were interviewed about their experiences. The semi-structured interviews were transcribed, coded, and analyzed for common themes. Results: Most participants were aware of some secondary uses of data. All participants felt that data usage for research was acceptable, but acceptability for non-research purposes varied across participants. The majority of participants were aware of the existence of a privacy policy, but few read the majority of the privacy statement. When previously unconsidered uses of data were discussed, some participants expressed concern over privacy protections for their data. Conclusion: When exposed to new information on secondary uses of data, customers express concerns and a desire to improve consent with transparency, more opt-out options, improved readability, and more information on future uses and potential risks from direct-to-consumer companies. Effective ways to improve readership about the secondary use, risk of use, and protection of customer data should be investigated and the findings implemented by DTC companies to protect public trust in these practices.

scholarly journals Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
C. Atkin ◽  
B. Crosby ◽  
K. Dunn ◽  
G. Price ◽  
E. Marston ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Awareness ◽  
Data Use ◽  
Academic Research ◽  
Secondary Data ◽  
Data Access ◽  
Health Data ◽  
Healthcare Staff ◽  
Secondary Use ◽  
Opt Out

Abstract Background England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. Methods A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. Results There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. Conclusion The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.

Privacy, Data Protection and Security in the Context of Direct-to-Consumer Genetic Testing Services

2019 ◽  
pp. 125-162
Author(s):  
Andelka M Phillips
Keyword(s):  
Genetic Testing ◽  
Indigenous Peoples ◽  
Data Protection ◽  
General Data Protection Regulation ◽  
Security Issues ◽  
Secondary Use ◽  
Direct To Consumer ◽  
Privacy Law ◽  
Protection Legislation ◽  
General Data

This chapter provides a broad overview of privacy, data protection and security issues raised by DTC services. This includes discussion of the EU’s General Data Protection Regulation (GDPR), the UK’s Data Protection Legislation, and a brief discussion of US and Canadian Privacy Law. It also covers secondary use of genetic databases, the Future of Privacy Forum’s Privacy Best Practices for Consumer Genetic Testing Services, and Indigenous Peoples and Data Sovereignty.

scholarly journals Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260340
Author(s):  
James W. Hazel ◽  
Catherine Hammack-Aviran ◽  
Kathleen M. Brelsford ◽  
Bradley A. Malin ◽  
Laura M. Beskow ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Law Enforcement ◽  
Third Parties ◽  
Policy And Practice ◽  
Genetic Tests ◽  
Secondary Use ◽  
Direct To Consumer ◽  
Potential Value ◽  
Risks And Benefits ◽  
And Control

Direct-to-consumer genetic testing is marketed as a tool to uncover ancestry and kin. Recent studies of actual and potential users have demonstrated that individuals’ responses to the use of these tests for these purposes are complex, with privacy, disruptive consequences, potential for misuse, and secondary use by law enforcement cited as potential concerns. We conducted six focus groups with a diverse sample of participants (n = 62) who were aware of but had not used direct-to-consumer genetic tests, in an effort to understand more about what people considering these tests think about the potential value, risks, and benefits of such testing, taking into account use by third parties, such as potential kin and law enforcement. Participants differed widely in the perceived value of direct-to-consumer genetic tests for ancestry and kinship information for their own lives, including the desirability of contact with previously unknown relatives. Some perceived ancestry testing as mere curiosity or entertainment, while others, particularly those who had gaps in their family history, few living relatives, or who were adopted, saw greater value. Concerns about intrusion into one’s life by purported kin and control of data were widespread, with many participants expressing concern about secondary uses of data that could harm users or their families. The use of direct-to-consumer genetic tests data for forensic genealogy elicited a particularly wide array of reactions, both spontaneously and in response to specific discussion prompts, mirroring the current public debate about law enforcement access to such data. The themes uncovered through our investigation warrant specific attention in the continued development of the science, policy, and practice of commercial direct-to-consumer genetic testing.

scholarly journals A Decentralized Identity-Based Blockchain Solution for Privacy-Preserving Licensing of Individual-Controlled Data to Prevent Unauthorized Secondary Data Usage

Ledger ◽  
2021 ◽  
Vol 6 ◽  
Author(s):  
Meng Kang ◽  
Victoria Lemieux
Keyword(s):  
Data Storage ◽  
Identity Management ◽  
Homomorphic Encryption ◽  
Personal Data ◽  
Secondary Data ◽  
Usage Control ◽  
Secondary Use ◽  
Data Usage ◽  
Novel Approach ◽  
Trusted Data

This paper presents a design for a blockchain solution aimed at the prevention of unauthorized secondary use of data. This solution brings together advances from the fields of identity management, confidential computing, and advanced data usage control. In the area of identity management, the solution is aligned with emerging decentralized identity standards: decentralized identifiers (DIDs), DID communication and verifiable credentials (VCs). In respect to confidential computing, the Cheon-Kim-Kim-Song (CKKS) fully homomorphic encryption (FHE) scheme is incorporated with the system to protect the privacy of the individual’s data and prevent unauthorized secondary use when being shared with potential users. In the area of advanced data usage control, the solution leverages the PRIV-DRM solution architecture to derive a novel approach to licensing of data usage to prevent unauthorized secondary usage of data held by individuals. Specifically, our design covers necessary roles in the data-sharing ecosystem: the issuer of personal data, the individual holder of the personal data (i.e., the data subject), a trusted data storage manager, a trusted license distributor, and the data consumer. The proof-of-concept implementation utilizes the decentralized identity framework being developed by the Hyperledger Indy/Aries project. A genomic data licensing use case is evaluated, which shows the feasibility and scalability of the solution.

scholarly journals Analysis of the early mother-child relationship in schizophrenic patients

2021 ◽  
pp. 002076402199118
Author(s):  
Marziyeh Khoshgoftar ◽  
Anahita Khodabakhshi-Koolaee ◽  
Mohammad Reza Sheikhi
Keyword(s):  
Cultural Context ◽  
Phenomenological Approach ◽  
Sampling Procedure ◽  
Structured Interviews ◽  
Step Method ◽  
Child Relationship ◽  
New Information ◽  
Data Saturation ◽  
Schizophrenic Patients ◽  
Mother Child Relationship

Background and Aim: The mother as the first caregiver plays a significant role in the formation of the child’s behavior, growth, and communication. The present study aimed to analyze the early mother-child relationship in schizophrenic patients. Materials and Methods: This qualitative study employed a descriptive phenomenological approach. The participants were male patients with schizophrenia who were hospitalized in Qazvin Bahman Psychiatric Hospital from March to September 2020 with an age range of over 18 years. Given the objective of the study, the data were collected using semi-structured interviews. The participants were selected using purposive sampling and the sampling procedure continued until data saturation as the point when no new information is observed in the data. Accordingly, the data were saturated after interviewing 15 participants. The data were analyzed using Colaizzi’s seven-step method. Results: The analysis of the data revealed four main themes including ambivalent attachment to the mother, feelings of constant fear and worry, a sense of constant care for the mother, and a cold and emotionless relationship with the child. Conclusion: The present study suggested that schizophrenia is a disorder that affects the mother-child relationship, and does the term “schizophrenic mothers” need to be reconsidered? However, the result of this research has been done according to the nature and cultural context of Iranian society.

Experiences of individuals receiving “Not Parent Expected” (NPE) results through direct-to-consumer genetic testing

2021 ◽  
Vol 132 ◽  
pp. S289
Author(s):  
Julia Becker ◽  
Janey Youngblom ◽  
Brianne Kirkpatrick ◽  
Liane Abrams
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer

scholarly journals An exploratory assessment of the applicability of direct-to-consumer genetic testing to translational research in Japan

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Masahiro Inoue ◽  
Shota Arichi ◽  
Tsuyoshi Hachiya ◽  
Anna Ohtera ◽  
Seok-Won Kim ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Translational Research ◽  
Drug Target ◽  
Target Genes ◽  
Healthy Individuals ◽  
Alcohol Sensitivity ◽  
Direct To Consumer ◽  
Disease States ◽  
Multiple Phenotypes ◽  
Related Phenotype

Abstract Objective In order to assess the applicability of a direct-to-consumer (DTC) genetic testing to translational research for obtaining new knowledge on relationships between drug target genes and diseases, we examined possibility of these data by associating SNPs and disease related phenotype information collected from healthy individuals. Results A total of 12,598 saliva samples were collected from the customers of commercial service for SNPs analysis and web survey were conducted to collect phenotype information. The collected dataset revealed similarity to the Japanese data but distinguished differences to other populations of all dataset of the 1000 Genomes Project. After confirmation of a well-known relationship between ALDH2 and alcohol-sensitivity, Phenome-Wide Association Study (PheWAS) was performed to find association between pre-selected drug target genes and all the phenotypes. Association was found between GRIN2B and multiple phenotypes related to depression, which is considered reliable based on previous reports on the biological function of GRIN2B protein and its relationship with depression. These results suggest possibility of using SNPs and phenotype information collected from healthy individuals as a translational research tool for drug discovery to find relationship between a gene and a disease if it is possible to extract individuals in pre-disease states by properly designed questionnaire.

scholarly journals Risk Management in Seaports: A Community Analysis at the Port of Hamburg

2021 ◽  
Vol 13 (14) ◽  
pp. 8035
Author(s):  
Ayman Nagi ◽  
Meike Schroeder ◽  
Wolfgang Kersten
Keyword(s):  
Risk Management ◽  
Natural Disasters ◽  
Secondary Data ◽  
Community Analysis ◽  
Detection Algorithm ◽  
Structured Interviews ◽  
Emergency Plans ◽  
Plausibility Check ◽  
Safety Risks ◽  
Community Detection Algorithm

The aim of this work is to detect communities of stakeholders at the port of Hamburg regarding their communication intensity in activities related to risk management. An exploratory mixed-method design is chosen as a methodology based on a compact survey and semi-structured interviews, as well as secondary data. A compact survey at the port of Hamburg is utilized to address the communication intensity values among stakeholders. Based on 28 full responses, the data is extracted, cleansed, and prepared for the network analysis using the software “Gephi”. Thereafter, the Louvain community detection algorithm is used to extract the communities from the network. A plausibility check is carried out using 15 semi-structured interviews and secondary data to verify and refine the results of the community analysis. The results have revealed different communities for the following risk categories: (a) natural disasters and (b) operational and safety risks. The focus of cooperation is on the reactive process and emergency plans. For instance, emergency plans play an important role in the handling of natural disasters such as floods or extreme winds.

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