Genetic Ownership: A Critical Analysis of Key Legal, Social and Bioethical Debates Concerning Genetic Ownership and the Rights of the Individual
Lead Research Organisation:
Queen's University Belfast
Department Name: Sch of Law
Abstract
Context of the research:
Increased social interest in personal genetic information has been fueled by the ability to conduct Direct-to-Consumer (DTC) genetic testing at home. With the affordability and availability of these services comes the caveat that DTC companies can assume ownership of their customers' genetic profile data and may even sell that data on to other commercial companies for profit (Roberts, 2018). Additionally, the risk exists the DTC genetic data is exploited by other third parties, where, most recently, the source of that exploitation has originated from within state authorities.
In 2018, United States law enforcement agencies successfully conducted online searches of an open platform containing DTC genetic genealogy data to identify the serial offender the Golden State Killer (Phillips, 2018). The searches were criticised as they were conducted without regulatory oversight, lacked transparency and also accountability (Murphy, 2018). Nonetheless, the investigative practice has gathered significant momentum within the United States where private companies now provide a service to conduct forensic genetic genealogical analysis and searches on behalf of law enforcement agencies with much publicised success (Greytak et al., 2019). Consequently, the United States Department of Justice published an interim policy on the employment of forensic genetic genealogy by law enforcement agencies to regulate the practice and also balance the rights of citizens (U.S. Department of Justice, 2019).
The investigative successes in the United States have not gone unnoticed by criminal justice agencies within the United Kingdom, with some commentators suggesting it is only a matter of time before the investigative practice is introduced here (Corbyn, 2018). Therefore, the possibility exists that innocent members of the public could face covert scrutiny by law enforcement agencies within the United Kingdom simply because they engaged a DTC genetic testing service. Yet, at the heart of these issues lies a fundamental challenge for law and policy makers, and that is to define genetic ownership within the context of DTC genetic testing. If consumers owned the genetic data generated by DTC genetic testing analysis then access to resultant genetic datasets would be dictated by the legal rights of those individuals.
Aims and objectives:
The overall aim of this project is to create an academic resource to inform future policy development and legal reform to regulate third-party access to DTC genetic datasets and protect the rights of data subjects, setting out avenues for legal redress where those rights are breached. The objective of the project will be achieved through evaluating existing legal and regulatory frameworks to determine who owns and enjoys legal rights to genetic data within the context of DTC genetic testing and determine whether further legal protections are required to limit third-party exploitation of genetic datasets and protect the rights of data subjects. The research project will also consider any additional measures DTC genetic testing companies and open platforms have put in place to protect DTC genetic data and data subjects. Furthermore, the impact of forensic genetic genealogy on criminal justice processes, the courts, and the public will also be evaluated.
Potential applications and benefits of the research:
Output from the research project will not only help inform future policy and legal reform but will also benefit review of existing regulation of the DTC genetic testing industry and the potential employment of the investigative practice within the United Kingdom. Moreover, the research will enhance public awareness of individuals' legal rights to their personal genetic data when engaging the services of DTC genetic testing companies, providing clarification on those rights and highlighting any implications for the individual, and their families, when sharing genetic data online.
Increased social interest in personal genetic information has been fueled by the ability to conduct Direct-to-Consumer (DTC) genetic testing at home. With the affordability and availability of these services comes the caveat that DTC companies can assume ownership of their customers' genetic profile data and may even sell that data on to other commercial companies for profit (Roberts, 2018). Additionally, the risk exists the DTC genetic data is exploited by other third parties, where, most recently, the source of that exploitation has originated from within state authorities.
In 2018, United States law enforcement agencies successfully conducted online searches of an open platform containing DTC genetic genealogy data to identify the serial offender the Golden State Killer (Phillips, 2018). The searches were criticised as they were conducted without regulatory oversight, lacked transparency and also accountability (Murphy, 2018). Nonetheless, the investigative practice has gathered significant momentum within the United States where private companies now provide a service to conduct forensic genetic genealogical analysis and searches on behalf of law enforcement agencies with much publicised success (Greytak et al., 2019). Consequently, the United States Department of Justice published an interim policy on the employment of forensic genetic genealogy by law enforcement agencies to regulate the practice and also balance the rights of citizens (U.S. Department of Justice, 2019).
The investigative successes in the United States have not gone unnoticed by criminal justice agencies within the United Kingdom, with some commentators suggesting it is only a matter of time before the investigative practice is introduced here (Corbyn, 2018). Therefore, the possibility exists that innocent members of the public could face covert scrutiny by law enforcement agencies within the United Kingdom simply because they engaged a DTC genetic testing service. Yet, at the heart of these issues lies a fundamental challenge for law and policy makers, and that is to define genetic ownership within the context of DTC genetic testing. If consumers owned the genetic data generated by DTC genetic testing analysis then access to resultant genetic datasets would be dictated by the legal rights of those individuals.
Aims and objectives:
The overall aim of this project is to create an academic resource to inform future policy development and legal reform to regulate third-party access to DTC genetic datasets and protect the rights of data subjects, setting out avenues for legal redress where those rights are breached. The objective of the project will be achieved through evaluating existing legal and regulatory frameworks to determine who owns and enjoys legal rights to genetic data within the context of DTC genetic testing and determine whether further legal protections are required to limit third-party exploitation of genetic datasets and protect the rights of data subjects. The research project will also consider any additional measures DTC genetic testing companies and open platforms have put in place to protect DTC genetic data and data subjects. Furthermore, the impact of forensic genetic genealogy on criminal justice processes, the courts, and the public will also be evaluated.
Potential applications and benefits of the research:
Output from the research project will not only help inform future policy and legal reform but will also benefit review of existing regulation of the DTC genetic testing industry and the potential employment of the investigative practice within the United Kingdom. Moreover, the research will enhance public awareness of individuals' legal rights to their personal genetic data when engaging the services of DTC genetic testing companies, providing clarification on those rights and highlighting any implications for the individual, and their families, when sharing genetic data online.
Organisations
People |
ORCID iD |
| GILLIAN WILMA KEILTY (Student) |