Demand European Union to fund the research on embryonic stem cells and on genome editing in germ-line

Desideria Mini
Desideria Mini
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We, citizens of different countries, believe that the criteria for funding biomedical scientific research must consider all those researches that can protect and promote scientific progress in the treatment of serious diseases in order to guarantee the primary interest of patients and future generations of Mankind.

Therefore European institutions should not exclude a priori funding for the most promising frontiers of medicine and biology like studies about regenerative therapies (those are researches that try to develop methods to regrow, repair or replace damaged or diseased cells, tissues or organs, including generation and use of therapeutic stem cells, tissue engineering and the building of artificial organs) or about preventive medicine in the future of medically assisted procreation.

Scientific evidences show that research on human embryos and related genome editing are among the most promising techniques for finding cures for several types of severe diseases or to prevent inheritable genetic ones in the offspring.

For these reasons we think the article 14 of the Horizon Europe proposal for funding research in the European Union from 2021 to 2027 must be changed.

The use of embryonic stem cells was effective both in preclinical trials for the treatment of neurodegenerative diseases in Lund, Cambridge and New York, where the clinical phase ought to start soon, and in clinical trials on blindness due to diseases in the retinal macula in London where several patients have recovered their sight. The respectively encouraging and excellent results of these researches have shown the effective therapeutic usefulness of the totipotent or pluripotent cells such as those of the embryo.

We also think the article 14 of the Horizon Europe proposal for funding research should not exclude activities intended to modify the genetic heritage of human beings, which could make such changes inheritable, when these are carried out for preventive or therapeutic purposes.

About 8000 monogenic diseases are known and each individual, often without knowing it, is a carrier of various mutations that can cause a genetic disease.

Today, fortunately, the new medical advances allow people who are born with a genetic disease to have a healthy life and this allows them also to get to have children. Thank to research, this will be even more true in the future. Obviously all that is a good news but this also means that harmful genetic variants are and will be always passed to children and therefore to future generations.

So, due to medicine, natural selection is and will be missing in human species. This will have serious consequences, especially in the long term. Indeed the harmful genetic mutations inevitably accumulate in the absence of the natural selection, because harmful mutagenic events occur more frequently than beneficial ones. So, considering all that, about those (many) genetic diseases whose onset generally occurs before or during the usual reproductive period of the individual's life, it is more than predictable that, moreover, their incidence in the human population over the generations will tend to increase, even up to a "point of unsustainability".

Unfortunately, pre-implantation genetic diagnosis of embryos (on its own) has limits that do not always make it sufficient or possible to deliver a healthy child and, in any case, a child not carrier of a dangerous genetic variant inherited from her\his parents and, in turn, transmissible to her\his future children; while the polar bodies biopsy is even more limiting because it allows the selection of genetic makeup coming only from female gametes, and does not exclude possible cases of gene conversion.

However, if appropriate basic research were carried out on human “fertilized oocytes” and human stem cells precursors of the gametes (on spermatogonia or reprogrammed induced pluripotent stem cells) one day predictably it may become possible to modify the human genome in hereditary way with safety and efficacy. Only then we could decide whether to apply the results of such research in the clinic to reduce the incidence of genetic diseases, or at least to stop their spread, still remembering, however, that these researches are first carried out in vitro also on human cells, otherwise this will never be possible.

Indeed we believe that in the future safe and effective inheritable treatments for serious genetic diseases should be allowed (and perhaps also encouraged) because they would prevent the disease for all the descendants. That would avoid having to cure and heal people for each generation, something of which, moreover, there would be need more and more.

We do not claim that this line of research is superior to others or that research into genetic somatic therapies should not be funded. We just want to say that in vitro research on genetic "germ-line therapies" are complementary and very important so that such research should not be excluded a priori from funding.

For all the reasons expressed we also believe that funding should also be allowed whenever it is directed to activities intended to create and grow human embryos within the fourteenth day of development, excluding the period of cryo-preservation, also solely for the purpose of research, like germ-line genome editing in vitro experiments and genetically edited embryos initial development studies, or for the purpose of stem cell procurement.

We also believe that funding should also be allowed including the somatic cell nuclear transfer for the purpose of stem cell procurement because the transfer of the nucleus of a somatic cell of a patient into an egg cell deprived of its nuclear genetic material would allow the production of embryonic stem cells compatible with the patient's own immune system, in order to avoid the transplant rejection.

It is also important that in the future the results of all these researches are shared among the people and benefit the entire world population.

For this reason we believe that it is wrong to let these researches take place only outside the European Union.

We urge Members of the European Parliament, EU Commissioners and Governmental representatives to revise the criteria for "Eligible actions and ethical principles" for funding biomedical researches of the Horizon Europe 2021 – 2027 in line with the present petition.

So we ask to emend the letters (b) and (c) of Article 14 of the Horizon Europe 2021 – 2027 as follow:

(b) activities intended to modify the genetic heritage of human beings which could make such changes heritable except for preventive or therapeutic purposes;

(c) activities intended to create human embryos solely for the purpose of research or for the purpose of stem cell procurement, including by means of somatic cell nuclear transfer, if it's planned that embryos grow for more than fourteen days or if there are other valid alternatives.

We, the undersigned