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Goldsmiths, University of London

8 Lewisham Way

London

SE14 6NW

United Kingdom

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Description

We are now almost two decades in the genomic era, and we have reached a point where genetic literacy/knowledge (including on information we can extract from data and associated legal and ethical issues) is important for all people.

A real need for this knowledge

We can already extract detailed information on traits (e.g. health and personality) from individuals’ genetic data and genomic sequencing is becoming routine. This raises many issues for consideration, for instance: genetic data breaches are common and unavoidable, anonymisation does not protect privacy and genetic data are valuable for more than one generation and therefore can be used to harm or benefit a person throughout their life and beyond. Potential misuses of genetics data/information are numerous.

To protect from misuses and benefit from advancements, as well as to promote legislative and policy updates, learning about these issues is now essential for individuals and organisations. Essential knowledge includes: the amount of information we can extract from genomic data, how to prepare for the genomic era, the legal protection in place, ethical implications, what individuals and societies can do to protect from misuses, and how to improve chances of benefiting from genetic science.

You will learn about:

  • The extent of information we can draw from an individual's genetic data
  • The global genomic research platforms and data sharing - implications for discrimination
  • How information extracted from genetic data can be used to discriminate and areas of potential discrimination
  • Merging of genetic data with big data/personal data and medical data - implications
  • Potential discrimination risks for individuals and groups (e.g. race, ethnicity etc.)
  • Laws regulating genetic data processing (e.g. UK Data Protection Act, General Data Protection Regulation (GDPR), Genetic Information Non-discrimination Act (USA)
  • Laws regulating genetic discrimination (e.g. Discrimination laws UK, General Data Protection Regulation (GDPR), Genetic Information Non-discrimination Act (USA), Genetic non-discrimination Act (Canada))
  • Commercialisation of genetic research and discrimination on access to benefits
  • Impact of inequality (beyond poverty) on peoples' genes (heritability) - from the authors of Genes and Gini: what inequality means for heritability

The course is a combination of law, genetics science and ethics.

It is designed to equip those taking the course with knowledge on:

  • Minimising genetic discrimination, including through knowing about the origin of risks, legal protection in place, and steps that can be taken (e.g. by individuals, research institutions, police administration, education administration and lawyers)
  • Protecting from potential discrimination
  • Promoting positive use of genomic science
  • Promoting ethical and legal use of genomic findings, data, and information

Tutoring

This course is directed by Fatos Selita, a Barrister and a New York State Attorney, with expertise on legal and ethical matters of genetics/genomics, including directing a module on Genomic Law and Ethics, and co-ordinating two working groups on Legal, Ethical and Societal Implications of Genetic Findings (LESIG), both in the UK and the Russian Federation.

All AIR courses & About AIR

The running of this course is subsidised by The Accessible Genetics Consortium (TAGC).

Discounts

  • 10% if you are taking two courses in consecutive weeks
  • 20% UK students
  • 25% Members of the UK Law and Society Association (UKLSA)
  • If five people register from the same institution for the same intake, the fifth place is free
  • Goldsmiths students, staff and alumni - email us for current discounts

Contact:

air@gold.ac.uk, or alternatively, 020 7078 5468.

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Date and Time

Location

Goldsmiths, University of London

8 Lewisham Way

London

SE14 6NW

United Kingdom

View Map

Refund Policy

Refunds up to 7 days before event

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