Addressing legal and ethical implications of genetic findings

Genetic/genomic findings come with enormous benefits for societies, if use of genetic information is regulated.  This is particularly important due to the amount of information we can now extract from an individual’s genetic data; the unavoidable data breaches and the numerous possible misuses of genetic information. This makes necessary regulating use of genetic information.

Key legal and ethical implications

Key legal and ethical implication which require urgent attention by governments and legislators include, Data Protection / Privacy; Children’s rights; Discrimination (e.g insurance, employment, education); Liability; State Surveillance, read more…

 

Genes and Human Rights: How are fundamental human rights in developed economies threatened by genetic advancements, and what can be done?

The paper: Genetic data misuse: risk to fundamental human rights in developed economies, published in Legal Issues Journal, explains how fundamental human rights are now under serious threat from misuse of genetic data – the ‘gold mines’ of the 21st century.  The paper outlines a number of steps that can be takento minimise harm and increase benefits for all people. Read more…

TAGC brings together efforts from lawyers, geneticists, media and policy makers.

Due to the global of genetic research and the unique nature of genomic data – TAGC works with partners internationally, including InLab, Goldsmiths, University of London, and the Institute of Law and Ethics at the International Centre for Research on Human Development, Tomsk State University.

TAGC provides training and expert Opinions on matters legal matters; disseminates knowledge; reviews law and its application in practice; reviews ethical guidelines; and makes proposals for policy and legislative updates. Read more…

Legislative and policy updates

Laws in place do not provide sufficient protection for people. The need for specific laws is particularly urgent considering the extent of information that can be extracted from genetic data, the permanent nature of genetic data; the large genetic data pools; and the regular data breaches. Legal regulation is also essential for benefits of genetic science to reach all people.

To respond to this issue, TAGC, in collaboration with its members, have set up the Working Group on Legal, Ethical and Societal Implications of Genetics (LESIG), which operates in the UK and Russia.

iGLAS for Justice Systems

TAGC and the Institute for Law and Ethics at the ICRHD have developed a survey /questionnaire on legal and ethical implications of genetics, iGLAS for Justice Systems, tailored to stakeholders of the justice systems, including lawyers, law students and judges. Read more…

Collaborations and contact

 

Contact: Fatos Selita, fs@inblc.com

ORGANISATIONS: We welcome proposals for collaborations, including from research organisations, law organisations (e.g. law firms, chambers, law schools), policy institutions and interdisciplinary organisations.

INDIVIDUALS: If you are a lawyer, judge or geneticist with an interest on legal implications of genomic findings, we will be happy to hear from you.

Key partner on LESIG work


 

Institute for Law & Ethics

 

ILE brings together Lawyers, Scientists and Policymakers to work on legal and ethical implications of genetics, including updating laws to protect individuals and ensure fair use of genetic findings.

ILE also provides professional training, consultation, reports and expert opinions in matters related to legal and ethical implications of genetics.

The Institute collaborates with international partners, including in the UK, USA, China and Canada.