To: the Members and Deputy Menbers of the Permanent Commission of the Ministry of Health

Utrecht, december 8, 2005

To: the members and deputy menbers of the permanent commission of the Ministry of Health and Social Welfare.

Dear members of Parliament,

On Tuesday, November 29, 2005, you received a letter from the secretary of state of the Ministry of Health concerning the subject “active termination of life of newborn babies”. The proposal refers to all neonates with a congenital birth defect. This implies that the proposal also includes a limited number of neonates born with spina bifida.

It is for this very reason that BOSK, the association of motorially impaired people and their parents, is submitting to you their reaction on the proposal submitted by Mrs Ross. We kindly, but urgently, request you to hold a public hearing on the above subject matter in order to enable people with spina bifida, parents and children wih spina bifida and their representatives to illustrate their objections against the proposal.

BOSK is the national pressure group for people with congenital motorial impairments. Members of the association are amongst others people with spina bifida and parents of children with spina bifida. BOSK’s reaction in this letter is based on experience, insight and knowledge of people with spina bifida and their parents. The proposal has caused a lot of commotion amongst our members.

Our main objections relate to the following issues:

1. The proposal also applies to a limited number of neonates with spina bifida. However, terminology such as “seriously suffering patient” and “hopeless and unbearable suffering”, are terms which ought to be used with extreme caution for this group of people. Spina bifida can be a very serious condition in some instances. However, the words serious and/or unbearable suffering should not be used, let alone that they should form the basis of a decision to end a life.

2. Terminating the lives of neonates with serious impairments remains punishable by law. In spite of this fact, according to this proposal it will no longer be necessary to report the active termination of life to the Department of Justice but rather to a central commission of experts. We find this incorrect and unacceptable. An act which is punishable, according to the present legislation, should remain punishable without exception.

3. The remark “not every violation of the carefullness will necessarily result in a prosecution”, means an erosion of the legal security for neonates and their parents.

4. The requirements for careful handling, mentioned in the proposal, are highly subjective and unrealistic. Subjectivity, amongst other things, relates to the judgement of what is meant by “ actual suffering, hopeless suffering and unbearable suffering”. The pronouncement “based on te current medical knowledge there is no doubt as to the diagnosis and prognosis” is not realistic. During the past number of years BOSK has listened to many witnesses telling about their quality of life which often are totally contrary to the findings and prognoses of the medical profession. In addition to the above, it appears that also based on the current medical science, the criterium “unbearable and hopeless suffering” can no longer be used as a valid argument neither in the case of euthanasia and much less in the case of terminating the lives of incapacitated neonates.

We can only reach one conclusion and that is that this proposal only serves one particular group: the medical profession. BOSK has pressed the point with secretary of state Ross that she formulates a ruling which strengthens the interests and rights of the child with a serious impairment and their parents. We are sorry to say that this proposal does not accommodate this issue in any way.

We urge you to put Mrs. Ross’ letter of November 29, 2005 on your agenda for a meeting with the permanent commission of the Department of Health and Welfare. In anticipation of this meeting the BOSK Board would like to discuss and illustrate its point of view during a personal meeting with you. We will contact you by phone in order to set up an appointment. In the event you have questions regarding the content of this letter or if you wish to give us a reaction, please contact Mrs. Klazien Bron, President of BOSK, at (030) 245-9090.

With kind regards,

Pieter Anthonio Deputy Chairman BOSK