Invited Editorial: Patient centric initiatives (PCIs) – a shift in the governance of science: Lessons from the biobanks world
Year: 2013
Type: article
Abstract: Recent developments in genomics have re-launched the debate about biobank ethics.Genomics developed into a landscape of possible uses of personal information, the end of which is virtually impossible to foresee.The public discussion about genomics changed from an extreme of excessive alarm into a seemingly quiet acceptance of a set of different practices, including broad consent for extensive biobanking, the creation of huge consortia that share data across projects and borders, and genomic screening of entire populations for some years.Advances in genetic technologies today offer the possibility to sequence whole genomes in order to exploit biobank resources at very little cost.Recent developments in the field now look into rare mutations, since common variants did not provide the expected results.This calls for very large collections in order to obtain meaningful results in the identification of rare mutations and detailed phenotypes, even more than before.It also shows that the value of biobanks lies increasingly in large numbers.Data-sharing in consortia or on public databases has become the rule, rendering it difficult to trace all the secondary uses that may occur with a set of data.At the same time, these valuable specimen collections increase their value, especially if directly linked to health records in order to enrich research data over time.In this climate, some experiences with the real implications of secondary uses of data, the availability on the internet of genetic testing, and the tendency to introduce results of genetic research in the public health sphere, has re-opened doors to 88860R EA9210.
Source: Research Ethics
Institutions: Eurac Research, University of Oslo
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W1985633891