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Key concepts of the interview with Itziar de Lecuona

There are no scientific or biological concepts that need clarification in this interview, but some terms may be worth looking at. The texts are mainly from Wikipedia.

This interview is about what is called the ELSI of research. The acronyms ELSI (in the United States) and ELSA (in Europe) refer to research activities that anticipate and address ethical, legal and social implications (ELSI) or aspects (ELSA) of emerging life sciences, notably genomics and nanotechnology. ELSI was conceived of in 1988, when James Watson, at the press conference announcing his appointment as director of the Human Genome Project (HGP), suddenly and somewhat unexpectedly declared that the ethical and social implications of genomics warranted a special effort and should be directly funded by the National Institutes of Health. In Europe, in the context of the Horizon 2020 programme, ELSA-style research is now usually framed as Responsible Research and Innovation, a concept that is becoming more widely used.

Responsible Research and Innovation (RRI)

RRI describes a research and innovation process that takes into account the effects and potential impacts of the research or innovation on the environment and society. The approach has been, and is currently, included in European Framework Programmes and has been developed in scientific and technological publications in journals and conferences, as well as in projects. There are several definitions of RRI. It ‘refers to the comprehensive approach of proceeding in research and innovation in ways that allow all stakeholders that are involved in the processes of research and innovation at an early stage: (A) to obtain relevant knowledge on the consequences of the outcomes of their actions and on the range of options open to them; (B) to effectively evaluate both outcomes and options in terms of societal needs and moral values; and (C) to use these considerations (under A and B) as functional requirements for the design and development of new research, products and services.’

RRI consists of six key action points: *Engagement: Implies that societal challenges should be framed on the basis of widely representative social, economic and ethical concerns and common principles on the strength of the joint participation of all societal actors, including researchers, industry, policymakers and civil society.

  • Gender equality: Addresses the underrepresentation of women, indicating that human resource management must be modernized and that the gender dimension should be integrated in research and innovation content.

  • Science education: Takes on the challenge of better equipping future researchers and other societal actors with the necessary knowledge and tools to fully participate and take responsibility in the research and innovation process.

  • Open access: States that RRI must be both transparent and accessible. Argues that the results of publicly funded research (publications and data) should be freely accessible online.

  • Ethics: Requires research and innovation to respect fundamental rights and meet the highest ethical standards in order to ensure increased societal relevance and acceptability of research and innovation outcomes.

  • Governance: Addresses the responsibility of policymakers to prevent harmful or unethical developments in research and innovation. The latter is a fundamental basis for the development of other the dimensions.

RRI can also be defined as ‘a transparent, interactive process whereby societal actors and innovators become mutually responsive to each other with a view to the (ethical) acceptability, sustainability and societal desirability of the innovation process and its marketable products in order to allow a proper embedding of scientific and technological advances in our society.’

Special attention should also be given to the concept of autonomy. Respect for a patient’s personal autonomy is one of many fundamental ethical principles in medicine. Autonomy can be defined as a person’s ability to make his or her own decisions. This faith in autonomy is the central premise of the concept of informed consent and shared decision-making. This idea, whilst considered essential to today’s medical practice, was developed in the late 1950s.

Precision medicine (Part 1)

Precision medicine (PM) is a medical model that proposes the customization of healthcare, with medical decisions, treatments, practices, or products being tailored to the individual patient. In this model, diagnostic testing is often used to select appropriate and optimal therapies based on the context of a patient’s genetic content or other molecular or cellular analyses. Tools used in PM can include molecular diagnostics, imaging, and analytics. In explaining the distinction between PM and the similar common term ‘personalized medicine’, the National Research Council explains: Precision medicine refers to the tailoring of medical treatment to each patient’s individual characteristics. It does not literally mean the creation of drugs or medical devices that are unique to a patient, but rather the ability to classify individuals into subpopulations that differ in their susceptibility to a particular disease, in the biology or prognosis of those diseases they may develop, or in their response to a specific treatment. Preventive or therapeutic interventions can then be concentrated on those who will benefit, sparing expense and side effects for those who will not. Although the term ‘personalized medicine’ is also used to convey this meaning, that term is sometimes misinterpreted as implying that unique treatments can be designed for each individual.

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Why Biology Matters: The Genome and You

Pompeu Fabra University Barcelona