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Ukrainian-American Birth Defects Program

Participation of the Ukrainian-American Birth Defects Program
at the 2-nd National Bioethics Congress

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October 2, 2004

Lyubov Yevtushok,
UABDP Medical Coordinator

Step by step bioethical movements are spread among the scientists, physicians and population. The main reason is inability to foresee the results of many modern biotechnology applications such as cloning, the usage of stem cells, genetic engineering etc.

The 1-st National Bioethics Congress, which took place in September 2001 in Kyiv, not only proved the growing interest to bioethical problems in Ukraine, but made a push for further work in this sphere.

Taking into consideration the importance of bioethical problems, at the end of 2001 there was organized the Committee of Bioethical Issues as a consultative and recommendation organ at the Cabinet of Ministers of Ukraine. After that such committees of bioethical issues started their work at all levels - national, regional and local.

On March 2002 Ukraine signed the Convention for the Protection of Human Rights and Human Dignity as to biology and medicine application: Convention about the Human Rights and Biomedicine. The active work is being held for its ratification by Verkhovna Rada of Ukraine and for signing the protocol to the Convention, statements of which forbid the cloning of human beings.

Taking into account information mentioned above, the Committee of Bioethical issues at the Cabinet of Ministers of Ukraine with the support of the National Academy of Sciences Presidium and Ukrainian Academy of Medical Sciences have decided to organize the 2-nd National Bioethics Congress on September 29 - October 2, 2004.

Motto of the 2-nd National Bioethics Congress
Motto of the 2-nd National Bioethics Congress

The aim of the Congress was to involve to the discussion of key bioethical issues in Ukraine the famous scientists and professionals in the sphere of biology and medicine, philosophy and law, representatives of religious groups, mass media and also civic organization.

The objectives of the Congress were the further improvement of legislation of Ukraine in the sphere of bioethics, promotion of keeping ethical norms and procedures within the organization of biomedical research, introduction of lecturing about bioethical issues into the curriculum of educational establishments, securing of openness of scientific and medical establishments activities, protection of the human rights and dignity of people taking into account application of up-to-date achievements in the sphere of biology and medicine.

The main topics of the Congress were as follows:
  1. Philosophical and anthropological aspects of modern biological ethics.
  2. Bioethics and law.
  3. Bioethics of additional reproductive technologies and prevention of birth defects.
  4. Bioethical aspects of clinical testing and registration of new medications and medical technologies.
  5. Ethical aspects of clinical practice.
  6. Experiments on animals and alternative research methods in biology and medicine.
  7. Ecological ethics and security of agricultural products.
  8. Forming of the individuals in the content of bioethics (upbringing and education).

In the framework of the Congress the following round tables took place:

Ukrainian-American Birth Defects Program (UABDP) took an active part in the Congress work.

Academician of the National Academy of Sciences and Ukrainian Academy of Medical Sciences Yuriy Kundiev in his introduction speech underlined the achievements of UABDP guided by its president Prof. W. Wertelecki in improvement of health and development of Ukrainian children.

The special guests of the congress were Prof. J. Frias (Center for Disease Control, Atlanta, USA) and Prof. R. Baumiller (University Xavier, USA) who took part at the pre-congress workshop together with the representatives from the Ukrainian Academy of Medical Sciences, Ministry of Health of Ukraine and UABDP participants - Prof. W. Wertelecki, academician Y. Kundiev, Prof. N. Horovenko, Prof. I. Barylyak, Prof. A. Nahorna, Dr. P. Vitte, Dr. L. Yevtushok. Ukrainian present-day problems of epidemics of NTD, the necessity of national Birth Defects Register organization, and also aspects of primary prevention of NTD with the help of folic acid, discussion of world experience as to the flour fortification with folic acid were brought for discussion during the pre-congress meeting.

Profs. J. Frias (left) and R. Baumiller (right) during the pre-congress meeting
Profs. J. Frias (left) and R. Baumiller (right)
during the pre-congress meeting
Acad. Y. Kundiyev at the pre-congress meeting
Acad. Y. Kundiyev at the pre-congress meeting

During the second plenary session (September 30, 2004), co-head of which was Prof. W. Wertelecki, reports of Prof. J. Frias (USA) "The national and international birth defects prevention programs for the Centers for Disease Control and Prevention" and Prof. W. Wertelecki "Birth defects, orphans and ethics" were presented.

The co-head on the third plenary session was Prof. R. Baumiller. He also presented his report "Bioethics, molecular biology, children, and religion".

On October 1, 2004 a sectional meeting "Bioethics of additional reproductive technologies and preventive measures of birth defects" took place, the co-heads of which were Prof. I. Barylyak and Prof. W. Wertelecki.

Profs. W. Wertelecki (left) and I. Barylyak
Profs. W. Wertelecki (left) and I. Barylyak

On the meeting such reports were presented:

The UABDP participants also presented their poster reports:

The discussion of all problems mentioned above found it continuation in the Round Table "Bioethical principles regarding disabled people" (Co-heads: W. Wertelecki, R. Baumiller, J. Frias - USA).

Presented data proved that children with Down syndrome and developmental defects, especially in combination with large structural anomalies, starting from the birth are under the threat of social orphanage, the reasons of which are attitude of the society, insufficiency of information, often loneliness, the inability to combine parental duties with a work. Such situation is influenced also by an insufficient development of early intervention systems based on multidisciplinary approaches.

The members of the meeting also argued the problems of children development, who are deprived of parental tutelage and are brought up in Children's Houses and Baby Houses. The most important problems are affection breakdown, physical and language developmental delay. One of the possible ways of how to overcome the symptoms is involvement of volunteering students (future teachers and nurses). For stimulation of intellectual development and prevention affection breakdowns of the children without parental tutelage those children need their own face, but not many strange ones. The stimulation which is provoked by strangers is valueless.

Active discussions during the Round Table
Active discussions at the break
Active discussions during the Round Table and at the break

The results of the sectional meeting "Bioethics of additional reproductive technologies and preventive measures of birth defects" and the Round Table "Bioethical principles regarding disabled people" are the further propositions to the resolution of the Congress:

  1. Prevention of birth defects is not only a medical, scientific but also a bioethical issue.

  2. Birth defects surveillance programs should be linked with early, comprehensive and coordinated health care services and both should utilize internationally established standards.

  3. Budgets for birth defects, in addition to provide for surveillance and health care interventions must also include necessary resources for birth defects prevention programs.

  4. The fact that folic acid supplements added to daily diet can prevent spina bifida and other malformations as well as cardiovascular accidents, shows that it is the bioethical duty of a health care system to implement preventive measures of those defects and malformations, which can be prevented for nowadays. Protection of the innocent, particularly children, the unborn children and those to be conceived is one of our main priorities. This can be fostered by policies that insure a better access to micro-nutrients such as iodine, folic acid and other factors by the population, in particular, women of reporductive age. In this spirit, there is broad support for the Ukrainian National Micronutrition Alliance, a multi-disciplinary and multi-faceted organization promoting food fortification.

  5. Bioethical principles must be included in the regulations concerned with technologies applied to the prenatal diagnosis of human beings. A special committee or equivalent should be charged to review and have the authority to resolve dilemmas arising from applications of reproductive technologies.

Another problem is the insufficiency of micronutrients in the diet of children. That is why prophylactic intake of multivitamins is very important.

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17/November/2004 sl