The Genomic Medicine Act, which promotes treatment tailored to patients based on genetic information and prevents discrimination, was approved and enacted with a majority of votes at a plenary session of the House of Councillors.
Genomic medicine is a medical treatment that diagnoses diseases and selects the optimal treatment and drugs for patients by analyzing genetic information that varies from individual to individual in detail, and is being applied to research and treatment, especially for cancer and intractable diseases.
The Genomic Medicine Act, compiled by a bipartisan parliamentary coalition, states that it will "realize the world's highest level of genomic medicine in a wide range of medical fields," and that the government will establish a basic plan for genomic medicine, promote research and development, and develop a foundation for managing and utilizing information on individual genomes and health.
In addition, since there is a concern that understanding the susceptibility to disease through genetic information may lead to discrimination and disadvantageous treatment in insurance, employment, marriage, etc., the Genomic Medicine Law provides guidelines on matters that doctors and researchers should protect to the government so that genetic information is appropriately managed and unfair discrimination is not carried out. We are calling for appropriate responses to issues that may arise due to discrimination and the spread of genetic information.
The Genomic Medicine Act was approved and enacted with a majority vote at a plenary session of the House of Councillors on the 9th.
Genomic medicine: There are concerns that it will lead to discrimination and disadvantages
In genomic medicine, while examining genetic information leads to the selection of the optimal therapeutic drug for patients, there are concerns that it may lead to discrimination and disadvantages such as enrollment in medical insurance, employment, marriage, etc. because the risk of disease is known.
In an awareness survey of cancer patients, more than 40% expressed concern, and in another survey, more than 3% said that they had actually been discriminated against based on genetic information.
A group led by Assistant Professor Yi Yan Lee of the Institute of Medical Science, the University of Tokyo, conducted an online awareness survey of more than 20,60 cancer patients in their 1s to 79s and their families regarding "whole genome analysis," which examines all genetic information of patients.
Of these,
0.72% of cancer patients and 8.60%
of their families answered that it would be beneficial because it allows them to treat diseases.
On the other hand, 8.62% of cancer patients and 9.42
%
of their families said that "if genetic changes related to genetic diseases are found, A certain number of people were worried
about the possibility of being treated unfavorably, with
7.47% of cancer patients and
5.<>% of their families feeling concerned about the handling of their genetic information.
More than 3% were "discriminated against" and some called for laws and regulations
In addition, Professor Kaori Muto of the Institute of Medical Science, the University of Tokyo, and her colleagues announced on the 20th the results of an awareness survey conducted on approximately 60,5000 people in their 8s to 3s regarding laws and regulations such as discrimination based on genetic information.
According to the survey, 3.74% of people responded that they had been discriminated against based on some genetic information.
Apart from the survey, there was also a case last year at a medical institution in Chiba Prefecture where a patient who underwent surgery for hereditary colorectal cancer claimed medical insurance payment, but received inquiries from the insurance company about the results of tests, etc., and the payment of benefits was delayed than usual.
In addition, 7.25% of respondents in the survey said they needed a law with penalties for
inappropriate handling of genetic information and discrimination, while
4.62% said it was not necessary.
When asked what kind of points they thought a law with penalties was necessary, 5.56% of respondents answered that there should be a law with penalties for prohibiting the unauthorized provision and resale of genetic information to third parties,
and 8.55% said that penalties would be strengthened when doctors and
public officials leaked genetic information.
2.51% prohibited unauthorized use of materials containing personal genetic information, 3.43% prohibited discrimination in employment or employment,
and
9.<>% prohibited discrimination in relation to private insurance.
Professor Muto said, "There have been many calls for effective laws and regulations due to discrimination based on genetic information, and now that the Genomic Medicine Act has been enacted, I would like to see more consideration of what specific cases constitute discrimination and whether penalties are necessary."