A bill to promote genomic medicine, which involves using people’s genomic information as part of their clinical care, has passed a Lower House committee and is set to be enacted after deliberations at the Upper House.
Genomic medicine uses insights from a human's complete set of DNA, or a genome, for genetically individualized and physiologically personalized medicine capable of detecting, treating and preventing diseases more efficiently.
The bill's purpose is to boost genomic medicine to one of the highest levels in the world and to ensure wide public access to the benefits of this revolutionary approach. In addition, the proposed legislation seeks to secure sufficient protection of personal genomic information and prevent discrimination based on such information.
It calls on the government to work out basic plans for taking comprehensive policy measures to achieve these goals and to take the necessary financing steps.
The notion that people’s human dignity or human rights should not be violated because of their hereditary genetic conditions is internationally shared as basic principles set by the Universal Declaration on the Human Genome and Human Rights, issued by UNESCO in 1997, and other international documents.
Some countries have laws that ban discrimination based on genetic information. A group of lawmakers have been working on the bill in response to calls for swift legislation for dealing with related issues from patient groups and the medical community.
The passage of the bill will represent a step forward.
Already, genetic testing to look for gene changes that are linked to cancer is covered by the public health care insurance program. The government is also funding a project involving comprehensive analyses of the genomes of cancer patients and other people suffering from intractable diseases.
When progress in genomic medicine makes it possible to estimate individuals’ chances of developing various diseases in their lifetime, it will affect not just patients of cancer or other intractable diseases but also all other people.
The government should develop effective plans to ensure healthy development and wider use of this innovative approach to health care and create regulatory and other frameworks for using personal genetic data.
The bill also contains a provision calling for effective responses not just to discrimination but also to various other issues and problems that could arise due to wider use of genomic information.
Experts have warned that people could face discrimination and other disadvantages due to their genetic profiles in a wide range of areas including insurance, employment, marriage and education.
A 2017 survey by a health ministry study group that asked some 10,000 people nationwide about their thoughts and experiences concerning the use of genetic information and related discrimination found that a certain number experienced discrimination related to health care insurance.
Some could not buy health care insurance policies as the insurers refused to sell ones to them, while others were required to pay higher premiums than others.
Last year, the Life Insurance Association of Japan, the life insurance industry organization, issued a statement saying member insurers were “neither collecting nor using” genetic information in underwriting or paying on insurance policies. But the association nevertheless referred to the possibility of reviewing this policy in the future.
It is not clear what exactly constitutes discrimination or disadvantages with regard to genetic information. Responses to the issue depend on individual cases. For now, efforts should focus on grasping the status quo and building a social consensus by showing key principles and guidelines.
There are already private-sector genetic testing businesses that use saliva samples to seek out specific genetic variants in customers’ DNA associated with the increased lifetime risk of various maladies.
But there are no scientifically established methods of assessing risks for such services. The envisioned new law should lead to legitimate efforts and new rules to secure the quality of such services.
--The Asahi Shimbun, June 4
EDITORIAL: Bill on genomic medicine should secure quality of new services
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05.06.2023
A bill to promote genomic medicine, which involves using people’s genomic information as part of their clinical care, has passed a Lower House committee and is set to be enacted after deliberations at the Upper House.
Genomic medicine uses insights from a human's complete set of DNA, or a genome, for genetically individualized and physiologically personalized medicine capable of detecting, treating and preventing diseases more efficiently.
The bill's purpose is to boost genomic medicine to one of the highest levels in the world and to ensure wide public access to the benefits of this revolutionary approach. In addition, the proposed legislation seeks to secure sufficient protection of personal genomic information and prevent discrimination based on such information.
It calls on the government to work out basic plans for taking comprehensive policy measures to achieve these goals and to take the necessary financing steps.
The notion that people’s human dignity or human rights should not be violated because of their hereditary........
© The Asahi Shimbun
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