2.0 The Involved Circle of People continued
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 for mistakes in my job performance?
- Do I anticipate that in the future my weak performance will be lightly pushed away in view of the expected
development of the illness, although at present there is no reason for it?
- Will my colleagues stand by me or will they desert me?
- Do I still have prospects of advancement in my carreer?
- Am I still taken seriously professionally?
- Will I be able to continue to educate myself?
3. Institutions
We are linked to institutions in many-layered ways. Our relationships to them can change drastically
following a positive test result.
Following are some examples:
3.1 Employers and Supervisors
As already mentioned, a positive test result
is not a diagnosis of the disease and does not predict the time of onset of the disease.
You are not obliged to inform your employer about the test results. If you want to do it anyway, you
should ensure that your employer can asses this information properly.
A positive test result could predict expensive
time off work and would thereby endanger job security. Even a well meaning employer-supervisor will encounter conflict of
interest when facing downsizing of his establishment. The assignment to a civil service position can be blocked by reporting
a bad test result. It is also possible that the entrance to certain professions can be blocked (5).
3.2 Insurance
Each insurance company works with statistical principles
and is profit oriented. Premium calculation is based on the probability that an insured event will occur.
Therefore,
predictable risks or events such as HD cannot be insured at all or only at a very high financial cost. If a positive result
has been posted officially, it has to be anticipated that no life insurance company will be willing to close a contract, and
private health insurances will require a surcharge.
Before you undertake the first
steps toward molecular genetic testing you should seek advice from a self support group that could give you advice (6).
There is a possibility for anonymous diagnostic testing where you will take care of the financial
costs of the test. This way only your acting physician will know the test results,and it will
not be but in your medical records.
3.3
Data Protection
At present there are no legal principles that assure data protection in this
sensitive area. It is entirely possible that the confidentiality of the physician can be breached, for example concerning
a new insurance contract. In this way data could reach insurance companies as well as employers.
If one refuses to
release one's physician from his confidentiality it could have negative reper-cussions. For example it could infer that the
person seeking insurance is hiding something.
4. After the Announcement of the Test Results
Independent of the nature of the test results, it will change your life. Experience has shown that
a negative test result is not necessarily purely joy, and that a positive result can have a calming effect. The test result
cannot be taken back, it opens the view to the future. You should be prepared for this.
You probably ask yourself the questions:
- What effect will the test result have on my future life?
- Can I continue my life as before after obtaining the test result?
- What should I change and what will I change?
4.1 Psychological Aspects
You should not underestimate the psychological burden while you are waiting for the test results.
The report of the test results can be a relief but it can also lead to a psychological crisis.
Whatever your test result, coping with it will be a learning experience which will require time and
strength.
For example, a negative test result could lead you to question your present life style which you adopted
anticipating to become ill at some future point in time. Or you may expect to suddenly be an infinitely happier person without
any problems. Do you have a confidant with whom you can share upcoming questions, doubts and anxieties?
This includes questions like these:
- Why am I affected?
- Why am I not affected?
- Will I be able to be unburdened and happy again?
A positive test result will evoke the following questions:
- Faced with the prospect of the disease, do I have the right to indulge in only the positive aspects
of life?
- Is the threat of illness used as an excuse for learning and performance disability, difficulties on
the job or in problem solving?
- Do my compatriots still take me seriously?
- Whom can I trust and whom not?
- Am I still being taken seriously in my job?
- Will I develop inferiority complexes?
Another complex of questions concerning the anticipated
disease follows:
- How great is my fear of the disease?
- What do I know about the disease and to whom can I turn who is familiar with the disease?
- What are the experiences and anxieties associated with the disease?
- Do I have any hope for new medication?
- How do I think about suicide?
- Would I consider talking with somebody about it and would I carefully think about such a step?
- How will I react when I believe I detect the first symptoms in myself?
5. Final Thoughts
We live in the information age. Knowledge is equated with strength. Does that imply, that not wanting
to know is equal to weakness?
There are people with a strong desire for certainty and others with a great tolerance for uncertainty.
Many people at risk have lived many years with this uncertainty, getting an education, collecting life experience and strength,
and have made themselves financially secure. The predictive molecular genetic diagnostic test terminates this uncertainty.
A test result can be a challenge. The uncertainty about your gene status is gone, but other questions
will arise.
(1) The presentation of a male individual in this report serves merely to simplify the text and for
easier readability. Naturally male and female persons are addressed equally.
(2) A medically positive result in this context is equal to being an HD gene carrier.
(3) A medically negative result in this context is equal to not being a (mutant) gene carrier.
(4) For three reasons the test result is not always completely accurate and informative:
a) for less than 1% of tested individuals was the result ambiguous.
b) in some circumstances a negative result is less reliable than a positive one.
c) laboratory error is very rare but exists.
(5) In Great Britain it is known that persons at risk for HD do not qualify for entrance into the armed
services or the Metropolitan Police Force.
(6) It may be prudent to take care of your insurance needs before making a decision about testing.
~~
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.
English translation by Helga Ahrens, Madison WI,
USA May 1996
