Presently, guidelines established by the Malaysian Medical Council (MMC) on Assisted Reproduction prohibit commercial trading in gametes (eggs and sperm), semen, or embryos (Section 15).
However, MMC guidelines are not strictly legally binding and do not carry as much weight as legal statutes enacted by the Malaysian Parliament.
In practice, MMC guidelines are mainly adhered to by public medical facilities funded by the government, while not being strictly followed by the private health care sector.
Subsequently in 2012, the Ministry of Health (MOH) promulgated ‘The Standards For Assisted Reproductive Technology Facility – Embryology Laboratory and Operation Theatre‘ to provide proper guidelines for the setting up of IVF centres throughout the country.
There was, however, no mention of the regulation of surrogacy, as well as sperm, egg, and embryo donation in this document.
Previously on several occasions, the MOH had proposed passing an ‘Assisted Reproductive Technology Technique Services Act’, most notably in 2009 and 2016, to address issues such as surrogacy, sperm and egg banking, and donation, in consultation with various stakeholders, including religious groups, non-governmental organisations, doctors, and government officials.
Some Malaysian university academics have also stressed the importance of such legislation. Nevertheless, to date, such badly needed legislation on the regulation of assisted reproduction techniques in Malaysia has still not come to fruition.
Consequently, due to the current lack of regulations, commercial trading in donor eggs is quite rampant in Malaysia, with numerous agents and agencies that are based mainly in the Klang Valley and Penang.
Because such profit-driven egg donor agents and agencies are completely unregulated, their unethical and exploitative business practices pose a substantial risk to IVF patients.
Here, the personal experiences of a Singaporean couple whose egg donor IVF cycle in Malaysia went badly due to the lack of regulatory oversight will be shared with readers. Their story was originally reported in a publicly available blog on the Singapore Motherhood Forum website.
This Singaporean couple had enrolled in an egg donation programme at a fertility clinic located in the Klang Valley in Malaysia.
They were introduced to their egg donor agent by their fertility centre, and were provided with five donor profiles to choose from.
However, only one donor matched the same blood group as the wife. This particular matching donor happened to cost the highest among the profiles that were shared.
As the couple was keen to select a donor with the same blood group as the wife, they called the agent to find out more about the donor. The agent claimed that this particular donor had very good egg quality, and had donated once time before at another well-known IVF centre in Kuala Lumpur with 16 blastocyst-grade embryos and seven Euploids (normal chromosome counts).
The agent told the couple that the previous IVF centre was calling her back for a second donation, and that his business partner may also want her. The agent thus pressured the couple to make the decision fast if they wanted to select her.
Although the couple felt a little pressured, they did not want to miss the chance as they had been searching for a suitable donor for a long time.
Based on the donor information the agent provided them and the last donation event, which was on January 10, 2023, they promptly signed the contract with the agent the next day and paid the required agent fee two days later on May 8, 2023 to book and secure the donor.
Subsequently, the Singaporean couple paid the clinic the required donor check-up fees for her medical check-up two days later. The donor’s blood test report showed elevated Haemoglobin F, which suggested the possibility of blood disorder and Alpha Thalassemia.
Hence, the doctor advised the couple to put the donation on hold and for the donor to complete a genetic screening test before proceeding further.
The couple then paid an additional sum of more then RM3,800 to the IVF clinic for the donor’s genetic carrier screening test. They were advised by their doctor not to ask the agent to directly arrange genetic testing of the donor because egg donor agents cannot be fully trusted.
There have been previous cases whereby agents had altered the historical health reports of donors before submitting them to IVF clinics. Therefore, tasking the agent to bring the donor to do genetic testing outside of the IVF clinic is risky.
For example, how would the couple know if the same donor went to do the genetic testing? Does the genetic report truly belong to the donor or someone else?
How would the doctor know if the genetic report results have not been modified?
As the donor is anonymous, there are various areas in which the Singaporean couple and their doctor do not have visibility or control over the process.
Due to the egg donor’s coming examination in June, the Singaporean couple raised a call to discuss with the doctor and consented to wait for her exams to finish before the agreed donation in her July cycle.
The couple kindly told the agent to reassure the donor not to worry too much about the genetic testing and to let her focus on her exams first.
While waiting for her examination to be completed, the couple passed messages to the agent from time to time asking her how she was doing and to take good care of herself. The Singaporean couple therefore placed a lot of hope and faith in their egg donor.
Unfortunately, without the couple’s knowledge, the donor went back to the previous IVF centre to do another egg donation cycle on June 2, 2023 (ovum pick-up) before her examination.
While she was on the stimulation injections for another recipient, she returned to the fertility centre to do the genetic screening blood test on May 25, 2023, running two donations at the same time.
Subsequently, in July, the donor’s menstrual cycle came later than usual. Unaware that the donor had already donated at another IVF centre in June, the doctor proceeded with her stimulation for the Singaporean couple’s donor cycle in July.
The result was horrendous. Two different IVF centres using different protocols and medication, one month after the other, left the couple with three embryosm and all were mosaic (mixture of normal and abnormal chromosomal counts).
Uncovering the truth was devastating to the couple. They found out about her second donation in late August and learned that the agent had also lied to them about the donor’s January donation results as well: eight blastocysts were deceptively presented as 16 blastocysts; and five euploids and two mosaics were deceptively presented as seven euploids.
The couple reported the incident to the doctor on September 1, 2023 and had a meeting with both the doctor and the agent. However, the agent denied knowing anything about the donor’s second donation in June.
The couple requested a refund from the agent, but he had absconded and blocked them on WhatsApp, not replying to any of their messages or calls. The couple then followed up with the IVF clinic week after week regarding the agent’s whereabouts, but the clinic did not provide them with any updates.
The couple them sought redress with their doctor but were given defensive answers, who disclaimed responsibility while stating that the donor’s poor result was likely cyclical.
The IVF clinic replied to them by email, saying that, “Here at XXX Fertility, potential donors are asked if they have previously donated their gametes, whether at XXX Fertility or other fertility centres. It is expected of them to be truthful”.
Subsequently, the couple learned that the donor’s result one month before them had six blastocysts, with four euploids of good grades.
But during the couple’s egg collection time, the embryologist had commented that the donor’s eggs were “not that normal” in their donor cycle and the outcome was below the norm.
It seemed that her body was under stress and her July menses were also delayed much later, while her May menses were on time. Her egg quality had been compromised.
Another doctor had also commented that it is very rare for such an outcome of three mosaic embryos from a 23-year-old donor. Hence, the couple did not believe that their donor cycle outcome was cyclical and not impacted by her secret donation one month shortly before them.
Altogether, the Singaporean couple had exhausted part of their hard-earned savings to purchase the donor eggs, incurring a sum of RM55 000.
They felt that their donor’s secret donation one month before their donor cycle had breached the trust and integrity of the donor programme that they had signed up for. Their agent had also fabricated the donor’s past donation results to deceive them.
Hence, tighter regulation of egg donation through the enactment of appropriate legislation is needed to prevent future cases of such botched egg donor IVF cycles, which would avoid much distress for both Malaysian and foreign couples.
Tabling the Assisted Reproductive Technology Technique Services Act through Parliament will not only protect the rights and welfare of patients, but can also protect the international reputation of Malaysia as a hub of fertility treatment in Asia.
Dr Alexis Heng Boon Chin, originally from Singapore, is an associate professor of biomedical science at Peking University, China.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of Ova.
