Mapping the ethics of human genomic technologies

21-9

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SIENNA has carried out an extensive ethical analysis of human genetics and genomics. We have identified a number of ethical, legal, and social issues both relating to new and emerging technologies within the next 5-10 years. You will find them outlined in our ethical analysis report. 

In the SIENNA ethical analysis report on human genetics and genomics, SIENNA researchers discuss some of the major ethical concerns associated with human genomics and genetics, such as informed consent, privacy and confidentiality of data, discrimination and return of genetic results to those who donated their biospecimens. The aim of the report is not to make recommendations or present solutions, but to identify and present the ethical, legal and social issues raised by different applications of human genomic technologies.

  • This SIENNA report includes an in-depth look at high throughput sequencing, and what ethical, legal and social issues this human genomic technology raises with a focus on 5 different domains: genome sequencing for research, in clinics and public health, for security surveillance such as forensic genomics, for building infrastructures such as smart homes and lastly as genomic-based dating apps to enhance partner compatibility. The report also covers gene editing and provides insight on the current status of gene editing and the ethical issues in relation CRISPR-Cas9. Here, the analysis focuses primarily on germline gene editing in research and in the clinic, but it also includes a brief section on CRISPR-based gene drive approaches in animals.
     
  • In parallel, the report offers a snapshot of what the human genomics debate circles around in different countries by asking all SIENNA partners to conduct a small-scale survey of the ethical, legal and social issues in the country where they work. These brief surveys helped ensure we considered the broad scope of these issues in and outside Europe (in Brazil, China, Germany, Greece, France, the Netherlands, Poland, South Africa, Spain, Sweden, and the UK). For example, we learned that regulating gene editing is important in China and that there is concern about the potential for exploitation of indigenous genomic data in South Africa.
     
  • The report discusses the different approaches to ethical analysis of human genomics and genetics. These include stakeholders’ approach, foresight analysis and ELSI (ethical, legal and social implications).

Download the report

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