Medical Tourism for Preimplantation Genetic Diagnosis (PGD)
Medical Tourism for Preimplantation Genetic Diagnosis (PGD)
Reprinted from Dr. Hsien-Hsien Lei's Eye on DNA blog
All parents want to protect their children from harm especially when it comes to serious illnesses. For families who have a history of inherited diseases, there is now the option of preimplantation genetic diagnosis (PGD) where one cell is taken from an early stage embryo and genetically screened for the disease-causing mutation. Currently, PGD can be performed for a long list of diseases including Huntington’s disease, breast cancer, neurofibromatosis, cystic fibrosis, and polycystic kidney disease.
This past weekend, the Brookhyser family was profiled in The Orange County Register. Stacy Brookhyser carries the Huntington’s disease (HD) gene and not only is she destined to develop the disease herself later in life, she has a 50-50 chance of passing on the gene to each child. But with the help of PGD, she and her husband were able to select embryos that are free of the HD gene and now have two healthy twin girls.
Last year, a reader in Malaysia, under the pseudonym Rica Lode, contacted me asking for more information on PGD for neurofibromatosis (NF) type I. Here’s what she said about their search for PGD (reprinted here with permission):
"I am in my 30s, born and bred in Malaysia. I’ve been married for a few years now with no children yet. I would never imagine one day how genetics would play a strong role in our lives. Genetics, bioethics has never been a part of my vocabulary before until I came across this term, preimplantation genetic diagnosis in the newspapers recently. It appears to be the latest “word†in the world due to “designer babiesâ€. This procedure allows parents to select the gender of their baby effortlessly.
To me and my husband, it’s a God-send solution to our dilemma. Because this procedure ensures we would have a healthy child as it is able to detect genetic disorder. My husband have a genetic disorder condition known as Neurofibromatosis Type I, where benign tumours would grow externally and/ internally on the peripheral nerves. It is a gene mutation on chromosome 17. There’s no known cure. There’s a 50% chance this would passed onto our next of kin."
Rica and her husband searched all over Asia for affordable and available PGD. The situation is much the same in Europe. At the annual meeting of the European Society of Human Reproduction and Embryology, a study on PGD patients travelling abroad for treatment found that patients had the following reasons for searching internationally:
- PGD was banned in their own country (PGD is banned in Ireland, Switzerland and Germany.)
- Quality of treatment
- Test availability
- Expertise in certain diseases
- Cost and length of waiting lists in their home countries
According to the study, the situation is untenable for both healthcare providers and patients where free exchange of information is impossible. Doctors are afraid of being prosecuted and patients aren’t able to access all the medical treatment, counselling, and support they need once they leave the country where PGD was performed. Mr. Lawford Davies, a solicitor specialising in reproductive and genetic technologies, recommends that members of the European Union develop a consistent policy across all countries and regulate rather than prohibit PGD. (HT: PHG Foundation)
In the end, elective procedures like PGD will be subject not only to legal restrictions, but also to market forces. Medical tourism is an increasingly lucrative business for the uninsured and the underinsured. There may not be a way around this but at least the procedure is available somewhere somehow.