Single nucleotide polymorphisms (SNPs) represent the portions of our genetic makeup where human differ from each other. Mapping an individual’s profile creates a DNA fingerprint entirely unique to that individual. The primary purpose for the creation of SNP profiles has been validation of medical techniques used in reproductive medicine that require researchers to be able to definitively determine which embryo makes which baby- thus matching DNA fingerprints from infants to those from embryos. In spite of this seemingly narrow use, the potential value of the information contained in the SNP profile is enormous.
In this paper, I explore how SNP profiles are collected and what it means for their potentiality that they are typically collected under research protocols rather than as standard medical care. I then consider the historical and recent litigation on ownership rights in genetic materials and evaluate how this applies to SNP profiles collected as research data. Next I discuss privacy concerns stemming from the collection of genetic data and analyze the current privacy laws available in terms of their applicability to SNP profiles. I then review the case law on physician liability in connection with genetic diagnosis and assess how the current model cannot work for SNP profiles. Finally, I propose a model for a centralized SNP profile repository that would control and clearly define liabilities, allow patients to manage their own privacy concerns and allow researchers unparalleled access to SNP data while also allowing patients the benefit of ongoing research on gene/illness analysis. While the current collection and banking of SNP profiles is a liability, we have an opportunity to consider options and create a structure that benefits both researchers and patients.
- ownership of genetic materials
Available at: http://works.bepress.com/stephanie_sgambati/1/