Food For Thought

Word format Food For Thought in Word

Food For Thought

Information pamphlet from the Huntington's Lay Organizations concerning
predictive molecular genetic testing. Compiled by Christiane Lohkamp, April 1996 Published by the Deutsche Huntington-Hilfe e.V. PO Box 281251, D-47241 Duisburg. Enlish translation by Helga Ahrens, Madison WI, USAMay 1996

Contents

Introduction

1. General Information about the Predictive Molecular  GeneticTest.

2. The Involved Circle of People

                   2.1 The Test Person Himself
                   2.1.1 Why do I want to undergo the test?
                   2.1.2 Partnership
                   2.1.3 The Wish for Children
                   2.1.4. Education and Job
                   2.2 Family
                   2.2.1 Partner
                   2.2.2 Children
                   2.2.3 Parents
                   2.2.4 Siblings
                   2.2.5 Relatives
                   2.3 Friends and Acquaintances
                   2.4 Colleagues

3. Institutions

                   3.1 Employers and Supervisors
                   3.2 Insurance
                   3.3 Data Protection

4.After the Announcement of the Test Results
                   4.1 Psychological Aspects

5. Final Thoughts

Introduction

You have picked up this pamphlet because you are concerned with the question whether you would like to take advantage of the direct molecular genetic test for Huntington's Disease (HD). This test has been available since 1993. Results of this test provide a view into a person's future. They are not a diagnosis of a manifest disease, but provide the information that he (1) who receives a medically positive result (2) carries a mutated gene for HD and if he lives long enough will develop the disease. Alternatively, given a negative result HD will not develop (3).

Decisions which affect a person's future should only be made after careful

consideration. The advantages and disadvantages of the consequences of such

decision to undergo the test should be weighed carefully against each other.

Only after you fully understand the consequences of the test should you decide

for or against it. This pamphlet will try to summarize experiences gathered in the

last three years. It groups the many-layered questions concerning the test into

individual problem areas - without claiming to be complete.

It should serve as a guide and help in reaching a decision and most importantly

stimulate thought. That is why we call it "Food for Thought."

I thank my colleagues from the Deutsche Huntington-Hilfe e.V., (DHH. Help for

Huntington's in Germany) individuals known to me who underwent testing who

contributed their experience, also members of the Huntington's Society in Germany who gave me "Food for Thought" and Ms. Helga Ahrens who kindly translated it.

Christiane Lohkamp
Vice President of the DHH e.V.,
Vice President of the International Huntington Association (IHA)
Stuttgart, May 25, 1996

1. General Information about the Predictive

Molecular Genetic Test.

This test predicts with near 100% certainty (4) whether or not an individual carries the genetic mutation that leads to the development of HD. The test provides indisputable results and can therefore change completely the life of a person that undergoes the test. A positive test result does not imply that HD is manifest. The information provided by the test results is limited.

It cannot answer questions such as:

When will a gene carrier develop the disease?
How will the disease progress?

2. The Involved Circle of People

You have to become clear about the following:

Who are the people affected by my decision

to undergo genetic testing?

With which people do I have contact presently?
Who could be added to this circle?

What relationships do exist and how could these

relationships be modified by a test result?

Which changes would be painful or even unacceptable?
With which people can I talk openly about being at risk for HD?

Are there people that I know who could bear

the test results with me?

Are there others who couldn't bear the results of the test?

2.1 The Test Person Himself

2.1.1 Why do I want to undergo the test?

The decision whether or not to undergo the test must be based on personal desire and should under no circumstances be made under outside pressure or duress. Investigate which thoughts you connect with the molecular genetic test.

Do I need the test results just for myself and why?
How important is certainty in my life?

Do I know how to cope with certainty better

than with 50 or 25% at-risk?

How will test results affect decisions I am about to make?

Do I have to face difficult decisions which I would like

to avoid by taking the test? E.g., change of a partner?

Do I have problems I hope to solve by the test results?

E.g., low performance or alcohol abuse?

Could test results be of actual help to solve my

problems or are there other alternate solutions?

Do I want to be tested because I anticipate a negative diagnosis?
How will I cope with a negative diagnosis?
How will I cope with a positive diagnosis?
Who will care for me when I do get sick?
Will my partner continue to love me and support me?
How do I relate to my parents?

Will I, or do I have to inform my parents, siblings or my

children about my intentions to undergo genetic testing?

2.1.2 Partnership

How will my wish to be tested affect my partner?
Does my partner understand the test and it's consequences?

Can I talk openly to my partner about my anxiety

concerning my at-risk status and does he have

someone to talk to about his questions and feelings

about the test?

Can I expect my partner to take over, or have thrust

upon him the responsibility to educate and nurture our

children and possibly one day take care of me?

Could the test results influence decisions concerning a partnership?
Should I pursue a partnership at all when faced with a positive test result?

2.1.3 The Wish for Children

Would I make a decision for or against having children

of my own depending upon the test result?

How would children react when they find out

about their 50% at-risk status to develop HD?

Will I refrain from having children who after all

might have 40 years or more of a healthy life?

How will I cope with my anxiety about my children?

How will my partner cope with his anxiety about me

and our children, especially in view of the fact that

one day he may be left alone with our children as I

could no longer offer support?

2.1.4. Education and Job

Do I need the test results to make decisions concerning my education?

Should I take upon myself a long term study program

or settle for a shorter practical education program?

2.2 Family

Family connections are no guarantee for endurance of a continued good
relationship. These relationships can be changed or destroyed even without

hardship. A test result with serious consequences, such as the molecular

diagnostic test result for Huntington's Disease represents, will have its

effect on the whole family.

Individual family members may be affected differently by the test results. Just the question: "test, yes or no?" split a family.

2.2.1 Partner

Will I have the support of my partner in my endeavor to

undergo testing or will he apply undue pressure on me?

How will I deal with it if my partner has a different

attitude toward the test?

Would he desert me after a positive test result?
Would he expect more of me after a negative test result?

2.2.2 Children

Do I need the test results to be a better father or mother to my children?
What legacy did I give my children?

Do I feel guilty with regard to my children and hope to

reduce this guilt by obtaining a negative test result?

How will my relationship with my children change after being

confronted with a positive test result that implies a 50%

at-risk status for them?

When and how will I inform my children?

How will I express to them my psychological trepidation's

during the test phase?

Do I feel obliged to my children or feel pressured by

them to clarify my gene status?

2.2.3 Parents

What thoughts do I bear concerning my parents?
Did they know about HD and their at risk status?

Do I blame them for giving life to me with a 50%

chance at-risk or carrying the gene for HD?

Do I take my right to clarify my at-risk status although

my parent at risk does not want to know?

Can I openly deal with my parents concerning my plan to

have the test performed, considering that a positive test

result can have grave consequences and a negative result

would provide relief to them.

2.2.4 Siblings

Should I inform my siblings about the gene test and my intentions?

Negative test results can invoke guilt feelings toward siblings

who have already developed the disease or toward those with

positive test results. Why on earth did I not get it?

2.2.5 Relatives

Family members at risk are all in the same boat.

Will my relationships to my relatives change with

a test result?

Will the whole family be drawn together or pushed further apart?

2.3 Friends and Acquaintances

Have I ever discussed HD with friends and acquaintances?

What are their feelings about such diseases? To whom

would I discuss my risk?

Who would remain loyal to me if I should become ill?

2.4 Colleagues

Should I report a positive test result to my employer?

If yes, at what time?

After reporting the results do I expect understanding