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Draft approved on use of patients' gene info amid discrimination fears

TOKYO -- A suprapartisan group of lawmakers on March 13 approved the draft outline of a bill to promote proper use of patients' gene information in disease treatment and prevention with a brake on genetic discrimination.

The draft outline centers around improvement of systems for research and development of genomic medicine and a specific provision to prevent discrimination based on genetic information. The lawmakers aim to submit the bill to the Diet and see its passage during the current ordinary session.

The move comes as the government has put efforts into promoting cancer genomic medicine. It has designated 11 medical institutions across the country as core hubs in advancing genomic medicine and has appointed 135 hospitals as partners in providing such treatment in conjunction with those hub facilities.

However, issues have been raised with genomic medicine in that its popularization could lead to discrimination resulting in higher insurance premiums and cancellation of informal job offers or engagements to marry when a person's key genetic information is known to others -- such as having a cancer-causing genetic mutation. There are as yet no laws regulating such discrimination in Japan.

The draft bill clearly defines what genomic medicine is, in the nation's first move of its kind. The bill requires the government and other bodies to take steps such as providing subsidies for research and development on genomic medicine, building a database for accumulating relevant information and securing counseling and support systems involving genetic specialists. The bill also calls for ensuring the quality of businesses offering genetic screening and testing services online for general consumers.

The lawmakers' group, headed by former Minister of Health, Labor and Welfare Hidehisa Otsuji, comprises members of the ruling Liberal Democratic Party and opposition parties including the Democratic Party for the People. The group has interviewed patients' groups and researchers over issues associated with genomic medicine.

In 2008, the United States introduced the Genetic Information Nondiscrimination Act to prevent discrimination based on genetic information in health insurance and employment. Germany and Canada also have legal provisions banning such discrimination.

While some members of the legislators' group called for the bill to specify what constitutes discrimination subject to prohibition, such as denying people insurance or dismissing employees based on their genetic information, the group plans to forgo the inclusion of such stipulations and related penalties in a bid to prioritize enactment of the bill.

(Japanese original by Norikazu Chiba, Science & Environment News Department)

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