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Related Concept Videos

Genetic Screens02:46

Genetic Screens

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Genetic screens are tools used to identify genes and mutations responsible for phenotypes of interest. Genetic screens help identify individuals or a group of people at risk of developing  genetic diseases and help them with early intervention, targeted therapy, and reproductive options.
Forward genetic screens
Forward or “classical” genetic screens involve creating random mutations in an organism’s DNA using radiation, mutagens, or insertion of additional bases, which...
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Genome-wide Association Studies-GWAS01:11

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Genome-wide association studies or GWAS are used to identify whether common SNPs are associated with certain diseases. Suppose specific SNPs are more frequently observed in individuals with a particular disease than those without the disease. In that case, those SNPs are said to be associated with the disease. Chi-square analysis is performed to check the probability of the allele likely to be associated with the disease.
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Evolutionary Relationships through Genome Comparisons02:54

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Genome comparison is one of the excellent ways to interpret the evolutionary relationships between organisms. The basic principle of genome comparison is that if two species share a common feature, it is likely encoded by the DNA sequence conserved between both species. The advent of genome sequencing technologies in the late 20th century enabled scientists to understand the concept of conservation of domains between species and helped them to deduce evolutionary relationships across diverse...
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Principles of Pharmacogenetics: Types of Genetic Variants01:27

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The human genome is over 99.9% identical between individuals, yet genetic differences exist at millions of bases. The human genome contains approximately 3 million variant positions per individual, many of which are heterozygous, contributing to genetic diversity and individual traits. Genetic variations include single-nucleotide polymorphisms (SNPs), insertions, deletions, and copy number variations (CNVs).SNPs, the most common variation, involve single-base changes in DNA. These can be...
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Human Genetics01:28

Human Genetics

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Human genetics provides a profound framework for understanding the interplay between genetic predispositions and human psychology. At the heart of this discipline lies the study of how genes influence physical traits, behaviors, and susceptibility to diseases. Each person carries a unique genetic code that subtly or significantly shapes their psychological and behavioral landscape.
The complex relationship between genetics and psychology is observable through common biological components such...
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Behavioral Genetics and Its Designs01:23

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Behavior genetics explores how genetic inheritance influences human behavior. It focuses on how genes, passed from parents to offspring, contribute to the development of behavioral traits and tendencies. This branch of genetics seeks to understand the complex interplay between inherited genetic factors and environmental influences in shaping our behaviors.
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Detection of Rare Genomic Variants from Pooled Sequencing Using SPLINTER
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How Sensitive Is Genetic Data?

Murat Sariyar1, Stephanie Suhr2, Irene Schlünder3,4

  • 11 Institute of Medical Informatics, Bern University of Applied Sciences , Bienne, Switzerland .

Biopreservation and Biobanking
|September 8, 2017
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Genetic data privacy is crucial for research. Differentiating whole genome sequences from other genetic data in legal frameworks can reduce hurdles for data sharing and ensure appropriate protection.

Keywords:
data protectiongenetic datagenomic datasensitive data

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Area of Science:

  • Bioethics
  • Genetics Law
  • Data Privacy

Background:

  • Growing demand for genetic data in research necessitates robust privacy measures.
  • Legal compliance and risk assessment are essential for using human genetic data.
  • European Union (EU) legal frameworks present challenges for genetic data sharing.

Purpose of the Study:

  • To analyze the legal basis and disclosure risks of using genetic data in research within the EU.
  • To examine the implications of legal definitions and "genetic exceptionalism" on handling genetic information.
  • To propose a differentiated approach to regulating genetic data based on its sensitivity.

Main Methods:

  • Analysis of the EU legal framework for genetic data.
  • Assessment of disclosure risks associated with DNA-related biomarkers (identity, health, relatives).
  • Comparison of legal definitions with technical specifics of genetic data types.

Main Results:

  • Genetic data use raises significant privacy concerns.
  • Current EU regulations may create unnecessary obstacles for data sharing.
  • Whole genome sequences present higher risks and warrant "exceptional" legal status compared to other genetic data.

Conclusions:

  • A nuanced legal approach is needed, distinguishing between highly sensitive whole genome sequences and other genetic data.
  • Treating all genetic data uniformly as "exceptional" can hinder valuable research.
  • Legal frameworks and codes of conduct should reflect these distinctions for responsible genetic data governance.