Regional Reports

August, 2004

In Norway, the public interest for biotechnology is constantly present and aspects of assisted reproduction are often discussed in the media. Since my last report the Norwegian parliament (Stortinget) has revised the legislation concerning Biotechnology. Some changes have been applauded by us working in the field of infertility and by the infertile patients, and some have not.

• The extraction of sperm cells from the epididymis or testis (PESA/TESE) is now accepted. But each individual IVF clinic must apply to the Directorate of Health for authorisation to carry out these procedures.
• Frozen embryos may be stored for 5 years (earlier the limit was 3 years).
• Donor sperm may now be used in combination with IVF techniques.
• But sperm donors will no longer be anonymous (as in Sweden).
• PGD is only permitted in relation to serious sex-linked inherited disease.
• Embryo research is still strictly forbidden.

A family (originally from Turkey) with mother and father carrying a gene mutation for Thalassemia major have a son with the disease. His name is Mehmet and the "Mehmet-case" is very well known to the Norwegian public. The parents are well oriented on the treatment perspectives for their son. Unfortunately no family members have the same tissue-antigen as Mehmet`s and can therefore not act as bone marrow donors. Their hope is to perform IVF and select an embryo for replacement that is not homozygous for Thalassemia and carrying identical tissue-antigens as those of Mehmet.

The public and politicians are divided, some wish to give priority to Mehmet's dilemma, to save his life or increase his life expectancy, and therefore allow the treatment. Others oppose embryo selection in general and especially in this case, believing that no child should be born solely for the benefit of another individual.

Stortinget has now, only some months after passing the new revised law at the end of 2003, revised the law once more and have established a committee too assess special cases, like that of Mehmet, and unrestrained now give their acceptance or not for the necessary diagnostic procedures (PGD) and treatment.

- Øystein Magnus