Genome editing enables scientists to modify the DNA, the building blocks of life. Different technologies are used, including an innovative technique called CRISPR-Cas/9, which involves cutting and splicing mutating genes that cause heritable diseases and conditions.
Like any novel technology, there are risks associated with CRISPR. For instance, a scientist may cut at the wrong area, known as off-target effects. Scientists are uncertain as to how this might affect patients. Moreover, mosaicism may also occur where only specific cells carry the edit but not others.
Hence, to develop genetic techniques which are safe and effective to be applied in humans, much research is needed. Primary research is necessary to check the safety and accuracy of genome editing. Clinical applications can then be performed after comprehensive studies have been conducted.
What could be missed in the debate surrounding human genome editing are ethical questions about the research that would precede clinical applications. Say a scientist wishes to experiment with human embryos. In such studies, numerous eggs are needed and are fertilised in the laboratory.
In a recent letter to Nature, Emilia Niemiec and Heidi Carmen Howard raise these ethical concerns. The authors found it very concerning that women who decide on egg donation may not fully understand the ethical issues to enable them to make an informed decision on whether to donate their gametes. Egg donation involves health risks for these women. And the payment they may be offered could tantamount to inducement especially for the poor and vulnerable research subjects. This adds an extra layer to the controversy.
Some years ago, there was adverse publicity about research In South Korea which involved coercing research staff to donate their eggs. In the ‘Hwang debacle’ an average of 17 eggs were extracted from donors for each successfully cloned embryo.
About 20 donors were paid 1.5 million won (approximately US$1,400) each. Some of the egg donors were junior research assistants from Dr Hwang’s team. Questions were legitimately raised about the exploitation of the women who donated their eggs for the experiments and exposed themselves to health risks, including death, due to ovarian stimulation to obtain their eggs.
Before egg donation, adequate counselling must be offered to the egg donors to ensure they are fully informed about the health risks involved in the donation. There are risks involved with egg donation due to ovarian stimulation to obtain the eggs. The egg retrieval process is invasive and painful. And high doses of ovary stimulating drugs are needed to induce the ovaries to make many eggs.
It is possible an egg donor may at some point experience ovarian hyperstimulation syndrome (OHSS), a severe medical condition. Fertility drugs can be linked to some types of cancers, which may not develop until the donors are in their later years. There have also been reported fatalities of women after IVF treatment.
Egg collection entails more risks than the removal of other human tissues for research. There has been a dearth of studies performed on the consequences of ovarian stimulation and egg donation. Thus many uncertainties surround the effects of drugs and procedures. And if an egg donor is not sufficiently informed of the various health risks, it is highly questionable whether genuine informed consent is actually provided by her.
In the context of research, the compensation for donors raises the issue of the commodification of human tissues. In some countries such as Australia, donations of human tissues to research are expected to be altruistic. The value of certain things, e.g. the human body, cannot be expressed in terms of money. Thus, donors should not sell their eggs.
But some women may be tempted by money to donate their eggs without receiving adequate information, e.g. the risks associated with egg extraction. This is especially true for economically disadvantaged women. In comparison, the state of New York permits researchers to access public funds to pay donors for the use of their eggs in research (up to US$10,000).
However, it may be argued that egg donors should receive reimbursements for the provision of their services. Like other medical research subjects, egg donors derive no benefit from the study. The surgery required for egg extraction is very different from sperm or blood donation. Donors should not be out-of-pocket after donation. However, payment that exceeds a reasonable amount should not be allowed to prevent the risk of exploitation of women and the commodification of gametes.
The selection of participants in CRISPR experiments needs very stringent ethical oversight. It is crucial to enact ethical safeguards to protect the rights of egg donors in research that utilises genome editing.
Dr Patrick Foong is a law lecturer at Western Sydney University. His research interest lies in bioethics and health law
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