PGTandMe: social networking-based genetic testing and the evolving research model.

Area of Science:

• Genomics
• Bioinformatics
• Sociology of Science

Background:

• Personal genetic testing (PGT) and direct-to-consumer (DTC) products are increasingly integrated with social networking technologies.
• This convergence creates opportunities for large-scale data collection for research purposes.
• Existing research models may be insufficient to address the implications of this new approach.

Purpose of the Study:

• To evaluate the transformative impact of integrating PGT with social networking on research methodologies.
• To identify and analyze the challenges posed by patient-driven genomic research.
• To explore the ethical, legal, and regulatory considerations arising from this hybrid model.

Main Methods:

• Conceptual analysis of the PGT and social networking hybrid.
• Examination of the shift towards genetic crowd-sourcing in research.
• Review of ethical, legal, and regulatory frameworks relevant to genomic data and online social platforms.

Main Results:

• The integration of PGT and social networking facilitates a new era of 'patient-driven' genomic research.
• This paradigm shift alters the structure, locus, timing, and scope of traditional research.
• Significant ethical, legal, and regulatory issues emerge, particularly concerning informed consent, IRB oversight, and IP rights.

Conclusions:

• The hybrid of PGT and social networking presents a powerful, yet complex, new frontier for genomic research.
• Addressing challenges in informed consent, data governance, and intellectual property is crucial for responsible innovation.
• Future research and policy development must adapt to the evolving landscape of patient-driven genomic discovery.