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NIPT and Genetic Counseling

NIPT and Genetic Counseling

In order to feel comfortable with NIPT, it is important to have psychological follow-up before and after the NIPT test.
This is where specialists and professionals who provide "genetic counseling" play an important role.

What is NIPT genetic counseling?

NIPT (new-type prenatal diagnosis) is performed as "clinical research" and can be performed at facilities registered as accredited by the Japan Medical Association and the Japan Society of Obstetrics and Gynecology, or at unlicensed facilities.

In order to feel comfortable with NIPT, it is important to have psychological follow-up before and after the NIPT test.

This is where specialists and professionals who provide "genetic counseling" play an important role.

This article will explain what genetic counseling is, its role, and the practice of genetic counseling.

What is Genetic Counseling?

Genetic counseling is a type of counseling provided by a counselor.

We assist clients in making more autonomous choices by providing professional information and consultation related to NIPT.

The "Guidelines for New Prenatal Genetic Testing Using Maternal Blood" emphasize the need for adequate explanation of the test and genetic counseling before and after NIPT, including awareness of the child's disability and individuality, information about chromosomal abnormalities, how to understand the results of NIPT, and an explanation of the next test, the amniotic fluid test.

What is important in receiving genetic counseling

Now, let's take a look at what you should pay attention to when you actually decide to receive genetic counseling.

1. Couples or partners seek genetic counseling

More than we might imagine, there is a fair amount of tension and stress involved in undergoing genetic counseling.

In order to reduce some of the burden felt from those tensions and stresses, it is most important that the couple or partner undergo the program together, rather than just the pregnant woman alone.

In addition, when making subsequent choices and decisions as a result of NIPT, genetic counseling for both of you will support each other's decision-making.

2. Decision-making after genetic counseling requires autonomy

The role of the specialist or genetic counselor in genetic counseling is to provide information and help couples understand the results in a way that supports their decision to undergo NIPT.

It is by no means a substitute for post-NIPT decision making.

They are required to undergo genetic counseling on the basis that the final decision on which option to choose after NIPT is theirs.

3. Do not hide your concerns, feelings, and questions from a trusted genetic counselor

Never be only passive in genetic counseling before making important decisions.

They use this information to help them understand and make decisions about more complex and more numerous information, such as chromosomal abnormalities and ethical issues.

To do this, we must actively express our doubts, concerns and feelings, and first make an effort to communicate what our ideas and positions are on NIPT and its results.

Of course, the medical professionals who provide genetic counseling are also human beings, so there is also the compatibility with the couple being counseled.

If we have any complaints that our feelings are not being accepted or that they are not listening to us deeply enough, it is important to let them know.

Practice of genetic counseling in NIPT

The purpose of genetic counseling for NIPT is to clarify the concerns, worries, and questions of the couple or partner undergoing testing, so that action can be taken to make the problem more easily resolved.

Genetic counseling is provided by a clinical genetic specialist or a certified genetic counselor. Both certifications are jointly granted by the Japanese Society of Genetic Counseling and the Japan Society of Human Genetics.

A list of how many specialists and counselors are available for both certifications can be found at the following website

A typical genetic counseling session is likely to take 30-60 minutes.

The cost of genetic counseling varies from facility to facility, but initial genetic counseling is about 4,000-10,000 yen, and the cost of NIPT testing is about 170,000-200,000 yen.

If you need to have another separate genetic counseling session after the NIPT test results, the cost will also be added.

During the actual counseling, you will inform the genetic counselor of your current situation, your medical history, your family situation, and your purpose for receiving NIPT/genetic counseling.

The NIPT test will be explained mainly in the following sections.

  • About the target chromosomal disease
  • Explanation of NIPT test results (how to interpret the results)
  • If the NIPT test is positive, the need for an amniotic fluid test

Ultimately, the point is to hear what they choose to do with the NIPT results, what medical and genetic information they gather and opinions they hear to get there, and how their opinions and feelings may or may not change in response to the NIPT results.

Non-NIPT-approved facilities may not have a genetic counselor on staff.

When undergoing NIPT at a non-NIPT-approved facility, check to see if genetic counseling is available, and if so, whether genetic counseling is available at other facilities.

Where genetic counseling is available in Japan

So, which medical institutions can actually provide NIPT and genetic counseling as well?

Currently, NIPT can be performed at facilities accredited as clinical research under the guidelines of the Japanese Society of Obstetrics and Gynecology or at unlicensed facilities.

You can browse NIPT facilities nationwide at the following website, the Genetic Medicine Facilities Search System You can browse NIPT facilities nationwide at "NIPT Consortium" and "NIPT Consortium".

Also on the "Genes, Health, and Society" Study Committee website as of July 30, 2008. List of Clinical Research Facilities on NIPT is available to the public.

Genetic counselors are also assigned to unlicensed facilities and genetic counseling is available.

In any facility, it is important that couples and partners undergoing NIPT choose a facility where they will receive adequate and appropriate explanations of the test.

Conclusion

If you decide to undergo NIPT, it is advisable to make sure that you receive appropriate medical care at both licensed and unlicensed facilities, and preferably genetic counseling at the same time.

It is important to choose a facility that provides an environment in which couples and their partners are comfortable with NIPT, including genetic counseling.

References