Ethics On Gene Editing

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The International Summit on Human Gene Editing took place last week in Washington, D.C. The meeting was jointly hosted by the U.S. National Academies of Science and Medicine, the U.K. Royal Society and the Chinese Academy of Sciences.

Throughout the coming year, scientists and ethicists from the hosting countries will examine the issues raised at the meeting. Their consensus report will be released in late 2016.

What Is Gene Editing?

Gene editing is the modification or elimination of certain sequences within strands of DNA.  There are a number of tools capable of editing genes, but the most simple, cheap and effective one is named CRISPR/Cas9.  This tool is so simple, in fact, that some “amateurs” are able to undertake gene editing experiments.

While gene editing holds the promise of excising mutated genes which cause illness, it is not without its risks and ethical dilemmas.  These differ according to the kind of cell being edited—somatic or germline—and the cell’s location, e.g. in an embryo.  Below in italics are comments from the conference.  Following the comments are my analysis thereof.

Somatic Cell Gene Editing

Genome editing of human somatic (body) cells aims to repair or eliminate a mutation that could cause disease…including HIV/AIDS, haemophilia, sickle-cell anaemia and several forms of cancer.  All techniques currently in various stages of clinical development focus on modifying the genetic material of somatic cells, such as T cells (a type of white blood cell).

It is right to focus on somatic cells first, but gene editing should only be undertaken when:

  • Success has first been reached on animal models;
  • The perceived benefits exceed the perceived risks; and
  • Only for therapeutic purposes when there is no other effective alternative to treat the sickness.

Germline (Gametes) Gene Editing

At this early stage, scientists should agree not to modify the DNA of human reproductive cells.

We agree. Until somatic cells gene editing is well proven, germline gene editing should not be considered.

“It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved  and (ii) there is broad societal consensus about the appropriateness of the proposed application….”

Many oppose germline modification on the grounds that permitting even unambiguously therapeutic interventions could start us down a path towards non-therapeutic genetic enhancement.

Editing germline cells poses substantial phenotypical (physical) risks. These risks are compounded because the alteration could be transmitted to children.

Ethically problematic, germline cell editing could also be used for non-therapeutic purposes, e.g. genetic enhancement.  Such editing amounts to eugenics—the purposeful manipulation of biological or genetic characteristics to create, in the view of some, superior people.

Note also the reliance on consensus.  Broad societal consensus does not make something good or true.  Truth is not reached through the opinion of the majority.  Its roots are much deeper.

Editing germline cells is currenlty prohibited in only 25 countries, 15 of them European.  Although the United States has not officially prohibited germline modification, the NIH’s Recombinant DNA Advisory Committee explicitly states that it “will not at present entertain proposals for germline alterations.”

Embryo Gene Editing

Some…at the summit expressed fear that even altering embryos that aren’t intended for implantation will pave the way toward germline editing.  And some worried that public opposition to embryo research could cause a backlash against use of genome editing as therapy.  But others saw an embryo research ban as unrealistic.

Science provides us with unequivocal evidence that the embryo is a human individual.  All human beings, because of their essence, have an intrinsic value.  That they were wrongly created in a lab, will not be implanted, or are not intended for pregnancy does not give them less value.  Gene editing technology should not be used to modify human embryos, though some are already doing just that.

In our view, genome editing in human embryos using current technologies could have unpredictable effects on future generations. This makes it dangerous and ethically unacceptable.  Such research could be exploited for non-therapeutic modifications.

Although they consider as unacceptable gene editing in embryos, paradoxically they do accept it  for non-therapeutic modifications, this means either for eugenics, or to do research on embryos, both incorrect.

The organizing committee stopped short of calling for a ban on editing human embryos and germ cells for basic research.

It is terrible that the organizing comittee did not ban outright gene editing of human embryos.  This is a de facto failure to recognize the embryo as a human person.

Established methods, such as standard prenatal genetic diagnostics or in-vitro fertilization (IVF) with the genetic profiling of embryos before implantation, are much better options for parents who both carry the same mutation for a disease.

This proposal also means treating the embryo as a thing, especially the embryo in preimplatatory phase; throwing a child away if he is sick.  The role of research and medicine is to end disease, not to end the life of ill people because we cannot yet cure them.

In August, several high-profile investors, including the Bill & Melinda Gates Foundation and Google Ventures, pumped US$120 million into the genome-editing firm Editas Medicine of Cambridge, Massachusetts.

Private funding of medical research is good, provided it respects all human persons, embryos included. How will these funds will be used?  Will they help science to serve people, or place people at the service of science?

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Dr. Pilar Calva