EDITORIAL: No time to waste in drawing up rules for genomic medicine

Japan is on the cusp of a new era of cancer care as the medical community focuses more on impressive advances in genomic medicine, the science of customizing medical care to an individual’s unique genetic makeup. Applied to cancer care, genomic medicine, also known as personalized medicine, involves tailoring treatment options to specific genetic abnormalities in individual patients that may be responsible for the spread of the disease.

While the promise of genomic medicine is raising expectations of more effective cancer therapies, it is also raising concerns related to sensitive information it exposes.

In resorting to this new revolutionary approach to cancer treatment, greater caution than ever is required in the protecting personal information and details of consultations with patients.

At the end of last year, the health ministry gave the go-ahead to examine more than 100 genes to identify gene mutations that may cause cancer.

The ministry designated 11 “core” medical institutions to conduct the tests and analyze their results for diagnosis, and more than 150 are cooperating in the project.

The costs of such testing will soon become eligible under the public health care insurance program.

While the use of this method will be limited to cases that meet certain criteria, mostly patients in advanced stages of cancer for whom standard cancer therapies no longer work, being able to use the public health care insurance program will create affordable new treatment options for many late-stage cancer patients.

Genomic information about individuals can be used for a wide range of areas in medical care, including diagnosis, treatment, risk assessment and prevention with regard to various diseases.

This approach has the potential to revolutionize clinical care. But people should be cautioned against excessive expectations for genomic medicine.

It is estimated that there are currently effective treatments for only 10 to 20 percent of the cases linked to specific gene mutations. In short, there are cases in which genomic medicine fails to work.

Precision medicine, also known as individualized medicine, also raises thorny issues, including the question of how much information about unexpectedly discovered gene mutations linked to specific cancer should be provided to the patients or their family members.

When medical experts use genetic testing for cancer treatment, it is vital that they provide detailed explanations in advance to the patients about the characteristics and limitations of the approach. Doctors should also realize that their support through careful counseling with patients is vital.

Since genomic medicine is still in its infancy, the medical community needs to take steps to promote the sharing of related expertise and the training of specialists so as to reduce the chances of significant differences in the interpretations and assessments of test results among medical institutions.

Another objective in the government’s policy efforts to promote genomic medicine is to create a database on genomic information to support related studies by companies and research institutions.

The envisioned database will be designed to help develop new therapies and drugs. An “information management center” to lead this project was created last year within the National Cancer Center Japan.

The center will comb through masses of clinical information concerning genes and the efficacy of specific treatments.

The center must ensure there is strict management of the information and secure the backing of patients and their families.

Genomic medicine also raises some broader issues, such as discrimination and other unfair treatment based on genetic information. Efforts should be enhanced to prevent and eliminate such forms of injustice.

An online survey of 10,000 or so people in 2017 by a research team at the health ministry found 3 percent of the respondents had experienced “inappropriate treatment” in situations like purchasing insurance policies and applying for jobs due to their medical records or those of their families with regard to genetic diseases.

Some countries have legally banned such discrimination. Japan should also start debating this problem to support the healthy development of genomic medicine.

--The Asahi Shimbun, April 10