The importance of genetic/genomic research involving stored biological specimens becomes increasingly apparent for the advancement of precision medicine. Genetic/genomic information could be useful in assessing the likelihood and extent of therapeutic response and/or adverse consequences of an intervention in individual patients. However, genetic/genomic research has several unique features which raise specific ethical and legal issues, many of which have been much debated and remain unresolved, especially when the research involves stored biological specimens. Ethical and regulatory frameworks that are aligned with and can facilitate the conduct of genetic/genomic research involving stored biological specimens are critically required. As of now, there are relatively few studies that have been conducted to address ethical and regulatory challenges in such research.
As genetic/genomic technologies continue to rapidly advance, it is clearly important to make a progress on the ethical and regulatory implications along with this advancement. Understanding the views of all the stakeholders is also of particular importance in order to shape a way to conduct genetic/genomic research involving stored biological specimens more appropriately in an ethically sound manner. This Research Topic aims to be a record of research and review relating to ethical and regulatory challenges in genetic/genomic research involving stored biological specimens that experts in this field can share their research studies (including empirical research studies), knowledge, perspectives, and experiences related to this topic.
This Research Topic is devoted to the publication of research papers, review articles, and short communications on key ethical and regulatory issues surrounding genetic/genomic research involving stored biological specimens. Key areas of coverage in this Research Topic include, but are not limited to:
• Informed consent, including broad informed consent and tiered consent;
• Risk & benefit;
• Privacy & confidentiality, including data sharing issues;
• Biobank & governance, including material transfer issues;
• Incidental findings & return of individual research results to research participants and/or their family members; and
• Related laws & regulations.
Empirical research studies are especially welcome.
The importance of genetic/genomic research involving stored biological specimens becomes increasingly apparent for the advancement of precision medicine. Genetic/genomic information could be useful in assessing the likelihood and extent of therapeutic response and/or adverse consequences of an intervention in individual patients. However, genetic/genomic research has several unique features which raise specific ethical and legal issues, many of which have been much debated and remain unresolved, especially when the research involves stored biological specimens. Ethical and regulatory frameworks that are aligned with and can facilitate the conduct of genetic/genomic research involving stored biological specimens are critically required. As of now, there are relatively few studies that have been conducted to address ethical and regulatory challenges in such research.
As genetic/genomic technologies continue to rapidly advance, it is clearly important to make a progress on the ethical and regulatory implications along with this advancement. Understanding the views of all the stakeholders is also of particular importance in order to shape a way to conduct genetic/genomic research involving stored biological specimens more appropriately in an ethically sound manner. This Research Topic aims to be a record of research and review relating to ethical and regulatory challenges in genetic/genomic research involving stored biological specimens that experts in this field can share their research studies (including empirical research studies), knowledge, perspectives, and experiences related to this topic.
This Research Topic is devoted to the publication of research papers, review articles, and short communications on key ethical and regulatory issues surrounding genetic/genomic research involving stored biological specimens. Key areas of coverage in this Research Topic include, but are not limited to:
• Informed consent, including broad informed consent and tiered consent;
• Risk & benefit;
• Privacy & confidentiality, including data sharing issues;
• Biobank & governance, including material transfer issues;
• Incidental findings & return of individual research results to research participants and/or their family members; and
• Related laws & regulations.
Empirical research studies are especially welcome.
