- Discrimination in access to insurance (e.g. health, disability, long-term care, life)
- Discrimination in access to employment
- Discrimination in access to education and educational support / funding
- Discrimination in access to benefits of genetics science
- Deprivation of freedom (e.g. through state surveillance)
- Limitations to freedom of choice (e.g. through influencing of decisions such as voting, career choice)
- Children’s rights (e.g. no say over whether their genome is sequenced)
- Consumer protection
- Liability and sentencing
- DNA based group discrimination
A number of fundamental human rights are now under threat – e.g. see
Selita, F. 2019. Genetic Data Misuse: Risk to Fundamental Human Rights in Developed Economies. Legal Issues Journal, 7(1). legalissuesjournal.com/article/1491/
Proceedings of the ‘International Conference: Justice in the genomic and digital era’
Brief description of some issues:
Data Protection / Privacy
Genetic data are sensitive and very complex. Genetic data banks are growing very quickly – with data banks in some countries, including data from the entire population (since 2003). The number of laboratories doing genetic sequencing is continuously increasing (in 2011 alone, around 750 laboratories obtained the licence in the EU). Data sharing is becoming increasingly more common. There are also significant IT advancements. However the development of the law is extremely slow, and urgent steps are to be taken to ensure protection of individuals.
Genetics and discrimination
Unless the laws are updated, the genetic code can be used negatively, including by large corporations and insurance companies for hiring purposes and to price insurance as to the genetic code. The laws preventing such use of genetic data are not developed in the UK or the EU, and are slightly more developed in the USA with GINA enacted in 2008. However, the protection is minimal due to numerous loopholes in the law and the lack of clear penalties for breaches. Therefore, urgent update of laws and policy in this area is essential.
Genetics and Sentencing
A common question is whether we should take the genetic code into consideration in sentencing, and there are numerous arguments both ways. Research has, however, shown that sentencing/jailing someone does not reduce her propensity to commit crimes. On the other hand, from findings to-date, we can come to the conclusion that tailoring the environment to the genetic propensity could reduce someone’s propensity to commit crimes, and it is likely that soon we will have the opportunity to use genetic science to reduce crime. TAGC will work towards clarifying grey areas.
Laws regulating genetic engineering are slightly more developed than those regulating other genomic related matters. However, further development is needed, and some countries have stricter regulations covering this area than others do, and some have little or no regulation. Having strict regulations in some countries and few to none in others diminishes the importance of these laws because large multinational companies, forbidden to conduct such research in one country, can do so in another. Therefore, to prevent misuse of the genetic engineering science, laws regulating this area must have international coverage.
Patenting of genes and genomic findings
Patenting in the field of genomics is a serious matter affecting science and society at large. By 2013 over 41% of the genome had been patented. Considering the genome has numerous segments with similar coding, when one segment is patented, research by other researchers on the other segments with same code would also be deprived. In addition, we are in the early stages of findings in genomics and so patenting of any parts of the genome or findings related to it, at this stage, negatively impact further development of science. Society is also harmed because a significant part of patented findings stem from public-funded research. Once the findings are patented without any conditions as to the sale price of the product (cure, etc.), the public has to again pay large sums to benefit from the findings it funded in the first place. Finding a solution which allows for development of science and for more accessible benefits is essential.