Bioethicist Inmaculada de Melo, at the Spanish National Cancer Research Centre (CNIO). Image: Laura M. Lombardía. CNIO.
• “It is still up for debate finding a system that allows donors [of biological samples] who end up helping generate significant profits to obtain economic benefits, too."
• “It is not yet clear what regulations we should apply to the synthetic embryos recently created”.
• “In laboratory work, it is important to promote practices that help build trust, to make science more responsible. Diversity in the scientific community is also relevant: it will generate more useful and relevant knowledge for society”.
Asturian philosopher Inmaculada de Melo Martín, Professor of Medical Ethics at Cornell University (New York, USA), is spending a sabbatical year at the Spanish National Cancer Research Centre (CNIO). She is conducting research about ethical issues related to biobanks, repositories of biological samples nowadays essential to biomedical research – CNIO’s Biobank is the Spanish node of European Biobanks and, as such, it makes samples from 700 biobanks in 24 countries available to the scientific community–.
the With a PhD in Philosophy, she specialises in research ethics and is a professor of Medical Ethics there. In her teaching activity, she invites future researchers to consider the moral aspects of their work. In her studies, she addresses issues such as reproductive and molecular genetics, reproductive health, cloning and new maternity options, always from the perspective of Bioethics and the Philosophy of Science. This year she has been appointed a member of the European Academy of Sciences.
In her studies De Melo Martín’s studies addresses reproductive and molecular genetics, cloning and new maternity options, always from the perspective of Bioethics and the Philosophy of Science. She has recently been appointed a member of the European Academy of Sciences.
If a new discovery is made using a sample from a biobank, does the donor have the right to any benefits?
Neither in Europe nor in the United States are they entitled to any financial benefits resulting from research on their samples. In some cases, they can be compensated for their effort or discomfort.
However, Henrietta Lacks’s family has just received million-dollar compensation in the United States for the use of her cells in research.
The settlement has not been reached because companies have made a lot of money from research derived from those cells. It’s a reparation because the cells were obtained illegally and immorally, without the knowledge or consent of the patient. In addition, the genomic data of these cells is now known to the entire international community; something that has violated the family’s right to privacy, who had also never given their consent.
Are there any protocols in place that prevent similar cases today?
Yes indeed. Current laws require the informed consent of any donor. In some cases, investigations can be carried out on samples without obtaining consent, although they usually need to be approved by an ethics committee. This happens, for example, with anonymous samples, because they can still give us scientific information.
Shouldn’t donors benefit as well?
The idea is to contribute altruistically to knowledge that will benefit the whole of society. But yes, the possibility of finding a system that allows some kind of financial recompense to those who contribute to the generation of significant economic profits is also up for debate.
Although the obligation to pay donors as a rule could discourage scientists, pharmaceutical and biomedical companies… There are sometimes incentives, however, for people to donate. And this can be regulated with policies.
What about reproductive – such as sperm or egg– donations?
Spanish law prohibits paying for such donations, but in the United States, however, it is done. It’s a complex issue. On the one hand, the aim is to promote solidarity as a social value; on the other hand, egg donation involves certain health risks for women. And it’s shocking that egg donation is the only altruistic contribution to this type of fertilization, which is very expensive when done privately. In addition, unlike donations of other life-saving organs, no one dies from not having biological children.
Continuing with reproduction, how do we regulate gene editing?
Most countries prohibit it explicitly or implicitly. The scientific community believes that it is not very appropriate, at least for now, but in some cases, there are also no laws against it.
In fact, very rarely have those responsible for ethical misconduct in research been sent to prison; they are often given fines, or work-related measures are imposed. It is very difficult to regulate these types of conduct to ensure they get custodial sentences.
Human synthetic embryos have just been created. Who regulates when and why a human being becomes one?
It’s certainly not science that decides. Science can tell us if a particular entity has the characteristics that we associate with a human being; those for which, for example, we do not consider it appropriate to experiment with it. The current agreement sets that limit at 14 days for embryos. With regard to the synthetic embryos recently created, it is not yet clear what regulations we should apply. And the issue can be tricky; if they resemble human embryos so closely that they can provide us with relevant information about our species, they should be subject to the same regulations. And, if they are not similar enough, how relevant will the data they provide us be?
Could these discoveries drive a change in regulation or should we apply the precautionary principle here?
There is a lot of debate around this. When a New York group achieved the milestone of keeping embryos – in this case fertilized – for up to 14 days, I participated in a study to evaluate the legislation in this regard and its reasons. We concluded that the time had not yet come to change the regulations.
From a more general perspective, what guidelines should ethical research follow?
In experiments, if they are conducted with human beings, their criteria must ensure that we respect their rights and well-being. And make sure we use the resources appropriately.
In general laboratory work, promoting practices that help build trust, to make science more responsible. Diversity in the scientific community is also important as this will generate more useful and relevant knowledge for society. Communities and structures that open science up to different perspectives are likely to produce better science.
Not all of us have ethical criteria. Do women or other groups under-represented in science make science more ethical?
We don’t have that data. Studies have been conducted as to whether women ask different questions than men, but no woman does the science she necessarily wants to. Scientific and social structures drive priorities and determine what is asked and what is not.
Now in philosophy and social sciences, a great deal of work is being done on how science contributes to the so-called production of ignorance, because there are things that it does not study. Feminists are realising that what is not asked affects the interests of minority groups, including women. That’s why it’s important to open scientific change to different perspectives and not just women.
Do ethics hinder progress in science?
Definitely not, although scientists often feel that those who are dedicated to ethics are just there to put problems and obstacles in the way of what science could achieve. But, if we believe that the purpose of science is to produce reliable knowledge that brings benefits to society, then we should make sure that we produce ethical science. What about the knowledge generated in an immoral way by the experiments of the Nazis? If people do not trust – for good reason – what scientists say and do when they conduct immoral science, no one will benefit.
Are there enough regulations for ethical decisions to be made in laboratories?
In general, there are codes of good practice, safety, etc. But they are usually expressed in bare minimum terms to avoid viruses escaping from the laboratory, or a major disaster.
The issues that concern unethical behaviour – how an author is decided, how economic priorities are set, how much money is attributed to what – depend on each country or even on each particular group.
Today it seems impossible to talk about ethics without mentioning artificial intelligence, which has turned out to be truly biased.
Artificial intelligence is simply the result of the processes we use to do science. Feminist groups have argued for many years that science is biased. In my classes on Ethics of Reproductive Medicine, for example, I usually ask students: how many contraceptive methods do we have for women? Loads. How many for men? Two. Why? They often say that the male reproductive apparatus is much more complicated. Possibly, but if we studied it more, we would know more about it. We have only very recently begun to investigate it with the idea of creating contraceptive methods for men. If this is the case in my field of work, artificial intelligence is bound to be biased.