As more families opt for pre-implantation genetic diagnosis to screen embryos for inherited diseases, determining the regulatory and ethical guidelines to govern such screenings is “proving difficult,” the Chicago Tribune reports. Although the field of embryonic testing initially focused on identifying genetic defects that are certain to cause suffering or death early in life, it has broadened to include tests for genes linked to breast and ovarian cancer, which are not always fatal, occur later in life and affect 50% to 85% of those who carry the gene, according to the Tribune. The leading U.S. genetic diagnosis clinic, which is the largest in the world, conducted more than 1,800 screenings in 2008 “aimed at weeding out embryos that carried worrisome family conditions, from sickle cell anemia to cystic fibrosis,” the Tribune reports. Different countries vary in their regulation of PGD. In the U.S., doctors are allowed to select embryos for a particular sex, a practice that is not allowed in Great Britain, where each instance of PGD must be registered with the British Human Fertilization and Embryology Authority. BFEA has approved the use of PGD for about 70 genetic defects “after intensive public consultation about what is a serious enough problem to justify trying to eliminate it,” the Tribune reports. It is “significantly easier” to conduct PGD in the U.S. because the government only licenses clinics, not individual procedures, the Tribune reports. Mark Hughes, director of the Detroit-based Genesis Genetics Institute, said his company has tested for 171 genetic defects. In the U.S., “there is no approval mechanism,” Hughes said, adding, “No one is saying you can do this to save a sibling but you can’t do this for BRCA1,” a gene linked to breast cancer. According to a John Hopkins University study, nearly 40% of individuals surveyed believed that embryo screening should be regulated more closely for ethical reasons. An additional 19% said the screening should be banned altogether, for reasons ranging from the belief that discarding an embryo is immoral to concerns that selecting against certain diseases will devalue the lives of people already living with those conditions. Clare Williams, a bioethics specialist at Kings College London, said that during public hearings in Britain, “quite a lot of people felt there could well be treatment (for some conditions) by the time these children grow up, and then (their condition) won’t be an issue.” Some experts say it would be beneficial to place limits on the type of genetic defects doctors are allowed to screen for in the U.S., the Tribune reports. The Hopkins study found that, as of 2006, 65% of about 200 U.S. clinics offering embryo screenings allowed clients to choose the gender of the implanted embryo, regardless of the gender of existing children or whether the child was their first. The Tribune reports that such data and a California-based genetics lab’s recent announcement that it would be able to select eye and hair color have raised public concerns about genetic selection of embryos. The lab’s claims have been “disproved,” and many experts believe that expanded embryo screening “probably is not a slippery slope toward designer babies” because PGD is “costly and difficult,” there are a limited number of embryos to choose from and “finding one that includes a number of desired traits would be very difficult,” the Tribune reports. Hughes said the “things you might want to select for in a child — intelligence, athletic prowess, body stature — involve not single genes but many, many genes.” According to the Tribune, PGD, used in conjunction with in vitro fertilization, costs about $3,500 in the U.S. and twice that in Britain (Goering, Chicago Tribune, 3/25).
Tag Archives: Designer Babies
John Gonzalez, the founding director of a controversial UK-based online company – ‘ManNotIncluded.com’, which delivered fresh sperm to women for DIY-insemination – was sentenced last week at the Wood Green Crown Court in London to sixteen months incarceration for five counts of fraudulent activities. Judge Juliet May QC said that he had ‘siphoned off thousands of
pounds’ in a ‘sustained course of fraudulent conduct’ and banned him from being a company director for five years.
The Department of Business, Enterprise and Regulatory Reform (BERR) led the investigation, which uncovered shocking business practices – including one client receiving sperm in a dirty coffee canister, while two former employees describe how women were given sperm from donors with completely different characteristics than requested. Gonzalez was successfully
prosecuted for lying to officials, forging documents and falsifying debts to evade relinquishing assets to creditors while illegally embezzling those funds to support an opulent lifestyle. Ultimately, he pleaded guilty to two counts of fraudulent trading, one count of financial misconduct, one count of forgery and one count of perjury.
Gonzalez launched the online business June 2002 amidst stormy criticism, claiming the website was the world’s first to courier fresh sperm and insemination equipment directly to lesbian, single and medically infertile couples who paid to register on the site, charging up to £7,000 for delivery. Some critics viewed the service as a threat to the family unit and dubbed the site ‘morals not included’.
Gonzalez’s service illustrated a loophole in current UK regulation, which governs frozen gamete storage and use, but not ‘fresh’ sperm. Medical practitioners and government authorities warned that this kind of service poses a potential threat to women’s and the resulting child’s health because the fresh sperm is not screened for any diseases. The Human Fertilisation and Embryology 1990 Act requires sperm donations to be quarantined for up to 180 days for testing. Some infections such as HIV may take up to three months to incubate, meaning that an HIV test at the time of the donation may not detect the virus even though the donor might be carrying it.
The service also presented potential legal complications. Under UK law, donors whose sperm is obtained through HFEA licensed clinics are not the legal parents of any resulting offspring. However, the legal position on the parentage of children born via sperm donated outside of HFEA license is unclear.
Gonzalez maintains that ManNotIncluded.com boasted 20 pregnancies and more than 5,000 customers. In December 2004, Gonzalez illegally liquidated the company with debt totalling over £220,000 and then continued to trade under a slightly different name. Meanwhile, he embezzled £185,000 from these company accounts.
damages to pay for the child’s care costs and other losses they will incur.
If the couple had been informed of the true sex of their child, they say they would have considered terminating the pregnancy. It is reported that the defendants will contest the action on the grounds that the couple did not make inquiries as to the sex of their child after ultra-sound scans and that the boy may have been conceived naturally.
Sex selection is permitted in Victoria only to reduce the risk of a serious genetic condition being passed to the child. The couple opted for the procedure to avoid passing on hameophilia, which also affects the boy’s uncle. ‘By choosing the IVF procedure, we hoped to never see a child suffer in this way again’, the parents told reporters. ‘At no stage did we want a
designer baby, we just wanted a healthy baby.”We love our little boy, but we are very sorry he has to go through so
much in his life’, the couple said. ‘We tried everything to avoid this situation, and now our boy has to go through all the pain and treatment in order to survive. We now face the fact that Jess will require treatment for the rest of his life’.
The action is being taken against Melbourne IVF, Ballarat Health Services, the couples’ obstetrician and Bendigo Radiology. In documents lodged with the court, lawyers for Melbourne IVF say that a counsellor told the couple in 2003 that there was a risk of misdiagnosis with the PGD method. They also claim the couple signed consent forms, including one that stated ‘If a pregnancy is achieved from biopsied embryos, we understand that further diagnostic tests are recommended to confirm the early embryo diagnosis’. No date has been set for the trial.