Now I get it! ELSI Lesson
1. What is ELSI?
ELSI stands for Ethical, Legal, and Social Implications. ELSI (pronounced Elsie) in Japan is sometimes understood as ethical, legal, and social issues. This page will help you understand ELSI research.
New research and technology are emerging day by day. They bring us more comfortable and more convenient life. But in some cases, they affect us in unpredictable ways. ELSI research is to assess the impact, and to take measures.
The term ELSI was first coined in the Human Genome Project, started in the 1990 in the United States. The Human Genome Project was a research plan to read the entire genome of human being, which requires all members of the society to get involved, not only doctors and patients.
Thus, all members of the society must discuss and assess the impact to share their point of views. They are citizens, policymakers, corporation, and academic society including medical and scientific researchers, philosopher, and academics from law, social science and ethics.
Clearly, ELSI research subjects are not only human genome but the latest and various cutting-edge research and technology.
Public trust is indispensable to advance research and to develop technology. One of the missions of ELSI research is to gain the public trust. ELSI researchers are not a spokesman of academia to persuade the public. We do not suppress the researchers to ban everything they do. We are a meditator to facilitate communication between researchers and the general public to discuss together the future of research and technology. That is the aim that ELSI purse to achieve.
2. What is the work of ELSI?
2-1. Role of ELSI research
One of the most important practical challenges that ELSI research faces is “Informed Consent”. Informed Consent is an ethical process and international rule to protect the patient’s right. Specifically, researchers must explain the procedure in detail to obtain the consent from patients of using their blood etc. for research purpose in advance. Patients have a choice of the consent of use after researcher’s explanation and understand the procedure. In recent years, the great advance of research and technology shows us new challenges to conduct Informed Consent. One problem is the increasing number of patients to participate clinical research. Another problem is the patients find it difficult to understand the explanation of the research; the level of research and technology are getting higher and more specialized. ELSI research needs to solve the problems.
In view of the above, ELSI research is expected to play many roles such as assessing the impact of new research and technology on the society, facilitating people on various standpoints, and actively proposing solutions. All of these share the attitude that is open to the society and involves various people for the discourse on research and technology.
2.2 Estimate the impact on society
Estimating the impact of the new research and technology on society is one of the important roles of ELSI research.
What specifically is the estimate? Let’s take human genome research as an example.
The latest human genome research need resources (blood etc.) from many people. But these resources contain donor’s physical information. For example, if a donor has a hereditary disease, and his/her information is leaked to outside, the donor may face many difficulties in life: marriage, insurance application, and job opportunity.
In addition, hereditary disease has two types: one is that the disease can be passed on to children from parent, another is not heredity but has new mutations. Hereditary type which is transmitted from parents to children may cause various problems to not only the patient oneself, but also all relatives if their information is leaked.
We need to recognize that it is not limited to a doctor and a patient, but the problem is for the society overall, where countless people involved.
Before the problem has turned into reality, we need to point out and foresee the possibility. That is the challenge of ELSI research. This is assessed by researchers from various fields of study with various viewpoints.
2.3 Connecting among different expertise
ELSI features to create a space for discussion to promote cooperation among various people from various expertise, instead of letting a few experts to speak unilaterally. Therefore, our activity to connect people from different areas is an important role for ELSI research.
New research and technology have an impact on people from various backgrounds. They are doctors and medial professionals who actually contact to patients, people with diseases and disabilities, researchers who conduct the cutting-edge medical or life science researches, academics who take ethical, legal or social scientific approaches for discussion, and a large number of citizens who support our society.
All people exchange their opinion, learn from one another, and understand the whole picture. This enables us to form a new discussion about new research and technology to implement it to the society. To promote the trend, we organize a symposium open to the public, and develop and use the new communication tool suited for Internet Connected Technologies. That is one way to translate ELSI research into action.
2.4 Proposing a solution
Other role of ELSI research is to examine what the measures to take for the challenges that are assessed and propose a solution. This enable us to aim to utilize the various ELSI research’s results to reflect the governance of researcher’s community or policy making of our government. Governance in this page is to establish a system by researchers themselves to conduct more ethical and better research.
But the solution needs to be realistic. When proposing, we need a process to boil down to the realistic ideas. Needless to say, we need a discussion involving people from various backgrounds.
3. What is the rule?
What we need as a guide to conduct ELSI research is many laws and guidelines which have been proposed inside and outside of Japan. These documents accumulated after a long discussion by reflecting some tragic incidents and accidents actually happened. Further, it reflects problems which are likely to happen. We would like to introduce important laws and guidelines in “Laws and Guidelines” sections which shows, the links to the website in the original languages. We hope you will read the sites as well.
(Hiroshi Toda)
