Tag: genetic enhancement

Bioethics Blogs

Should We Cure Genetic Diseases?

June 07, 2017

by Professor Bonnie Steinbock

Should We Cure Genetic Diseases?

In “Trying to Embrace a ‘Cure’,” (New York Times, June 4, 2017), Sheila Black notes that in the near future there may be a treatment that could amount to a cure for the genetic illness she and two of her children have — X-linked hypophosphatemia or XLH. Although XLH is not life threatening, it has significant disadvantages, including very short stature (short enough to qualify as a type of dwarfism), crooked legs, poor teeth, difficulty in walking, and pain. A cure would seem to be cause for celebration.

But Ms. Black is ambivalent about the prospect. Although she acknowledges the potential benefits both to individuals and to society, the issue is, for her, complex.

Having a serious disability may enable the development of certain virtues. She writes, “… to be human often entails finding ways to make what appears a disadvantage a point of strength or pride.” Or, as Nietzsche put it,  “That which does not kill us, makes us stronger.”

It’s very likely that having polio made Franklin Roosevelt emotionally more mature and strengthened his character, but would that be a reason to oppose the development of the Salk vaccine? Comedians often credit their talent from having been bullied as children; novelists and playwrights find inspiration in their awful childhoods. Admiring their ability to overcome adversity does not mean being ambivalent about ending bullying and child abuse.

Another reason is that disabilities have created communities that are a source of support and identity.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Human germline genome editing: An ‘impressive’ sleight of hand?

Françoise Baylis wonders how it is that in 14 months (from December 2015 to February 2017), the U.S. National Academy of Sciences and the U.S. National Academy of Medicine have moved human germline genome editing out of the category ‘irresponsible’ and into the category ‘permissible.’

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In December 2015, the U.S. National Academy of Sciences, the U.S. National Academy of Medicine, the Chinese Academy of Sciences and the U.K.’s Royal Society co-hosted an International Summit on Human Gene Editing. At the close of the meeting, members of the Summit Organizing Committee issued a Statement that included four discrete conclusions. In response to the Statement, the Presidents of the four co-sponsoring organizations confirmed that: “Together with academies around the world, and in coordination with other international scientific and medical institutions, we stand ready to establish a continuing forum for assessment of the many scientific, medical, and ethical questions surrounding the pursuit of human gene-editing applications.”

One of the pivotal conclusions in the 2015 Statement was that “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, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application.”

This conclusion has since been usefully characterized as a helpful ethics framework for decision-making about heritable germline modification. The framework is both beautifully simple and exquisitely complex. It is simple in that there are only two conditions to be satisfied.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Human genome editing report strikes the right balance between risks and benefits

Gene therapy is growing in its capabilities, but there should be limits to its use. Shutterstock

If you recognise the words “CRISPR-mediated gene editing”, then you’ll know that our ability to alter DNA has recently become much more efficient, faster and cheaper.

This has inevitably led to serious discussions about gene therapy, which is the direct modification of someone’s DNA to rectify a genetic disorder, such as sickle cell anaemia or haemophilia. And you may also have heard of deliberate genetic enhancement, to realise a healthy person’s dreams of improving their genome.

Both of these issues have now been tackled in a comprehensive report on gene editing released today by the US National Academy of Science and National Academy of Medicine.

The message is fairly simple: relax, we’ve seen this all before, little if any harm has eventuated, and society is well placed to move forward together on this.

A definite maybe

Of all human technologies, recombinant DNA has arguably been one of the safest. There have been multiple benefits in both medicine and agriculture. And the legitimate concerns that arose when viruses were first mixed with bacterial genes, when cloning was first introduced, and when stem cells were developed, have not come to pass.

I cannot list all the benefits here, but if you have received the Hepatitis B vaccine or Australian Ian Fraser’s Gardasil vaccine, which protects against cervical cancer viruses, you have been protected from disease thanks to recombinant DNA technology.

However, you probably haven’t received somatic gene therapy, which is gene alteration directed at fixing one cell type, such as defective blood or liver cells.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The National Academy of Sciences Expands its Approval for Gene Editing

by Keisha Ray, Ph.D.

This week the National Academy of Sciences (NAS) released a report giving their support for altering heritable genes when previously the NAS only supported altering uninheritable genes. Although it gave very special conditions in which altering human eggs, sperm, and embryos would be acceptable, giving their seal of approval to any alteration of the human germline is a revolutionary move for the current and future status of genetic engineering for a few reasons:

  1. Expanding Clinical Research

Genetic engineering is already practiced for non-heritable genes. Genes that are known to cause chronic and debilitating diseases are the subject of clinical trials all across the world. However, with the advancement of affordable gene editing technology like CRISPR, some bioethicists, physicians, and scientists have changed their stance on what was once seen as an unethical use of genetic engineering—altering genes that could be passed down to offspring. Now the NAS endorses extending the benefits of gene editing to preventing, curing, and treating chronic, deadly, and heritable diseases, when there is no alternative intervention. Changing their ethical stance on gene editing will expand clinical research and change how research funds are allocated. It will give laboratories new avenues in which to pursue cures for diseases that were once thought incurable. Inevitably, there will be also be an increase in lively debate among bioethicists about what the NAS’s new report means for the relationship between science, ethics, and patient care.

  1. Research Arms-Race

The release of this report, for better or for worse, puts the United States on the same playing field as other countries who have already begun to use gene editing tools to alter the germline, particularly in embryos.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

China Is at the Forefront of Manipulating DNA to Create a New Class of Superhumans

November 21, 2016

(Quartz) – So are we on the brink of a brave new world of genetically enhanced humanity? Perhaps. And there’s an interesting wrinkle: It’s reasonable to believe that any seismic shift toward genetic enhancement will not be centered in Western countries like the US or the UK, where many modern technologies are pioneered. Instead, genetic enhancement is more likely to emerge out of China.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

The Future of Genetic Enhancement Is Not In The West

It’s reasonable to believe that any seismic shift toward genetic enhancement will not be centered in Western countries like the U.S. or the U.K., where many modern technologies are pioneered. Instead, genetic enhancement is more likely to emerge out of China

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Gene editing in human embryos. England opens the gates in the face of a divided scientific community

The United Kingdom Human Fertilisation and Embryology Authority (HFEA) has approved a request from the Francis Crick Institute to use new gene editing techniques in human embryos for the first time. The research will be led by Dr. Kathy Niakan. The group’s objective is, in principle, to determine which genes are necessary for successful development of the human embryo, to hopefully improve the viability of embryos obtained by in-vitro fertilisation (IVF), and to develop new treatments for infertility in the future. Nevertheless, once the gates have been opened to these types of studies, other applications will be investigated.

The research will use embryos left over from IVF treatments, which will be observed for the first seven days of development, after which they will be destroyed.

The ethical repercussions of this decision are considerable. On one hand, numerous human embryos will be manipulated and then destroyed, which is morally unacceptable. Less tragic, but also entirely reprehensible, is the fact that this is a germline genetic modification, since any modification of an embryo in such an early stage of development will appear in all its cells, and would be transmissible to its descendants. In fact, it is because of the risks that this poses that the embryos will only be allowed to live for seven days, as the consequences of this early genetic modification are unpredictable. Nevertheless, approval of these experiments puts us on a slippery slope towards the introduction of germline genetic modification in human medicine, which in turn could lead to the practice of genetic enhancement.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Gene editing in human embryos. England opens the gates with a scientific community deeply divided in this respect

The United Kingdom Human Fertilisation and Embryology Authority (HFEA) has approved a request from the Francis Crick Institute to use new gene editing techniques in human embryos for the first time. The research will be led by Dr. Kathy Niakan. The group’s objective is, in principle, to determine which genes are necessary for successful development of the human embryo, to hopefully improve the viability of embryos obtained by in-vitro fertilisation (IVF), and to develop new treatments for infertility in the future. Nevertheless, once the gates have been opened to these types of studies, other applications will be investigated.

The research will use embryos left over from IVF treatments, which will be observed for the first seven days of development, after which they will be destroyed.

Human gene editing ethical debate

The ethical repercussions of this decision are considerable. On one hand, numerous human embryos will be manipulated and then page3destroyed, which is morally unacceptable. Less tragic, but also entirely reprehensible, is the fact that this is a germline genetic modification, since any modification of an embryo in such an early stage of development will appear in all its cells, and would be transmissible to its descendants. In fact, it is because of the risks that this poses that the embryos will only be allowed to live for seven days, as the consequences of this early genetic modification are unpredictable. Nevertheless, approval of these experiments puts us on a slippery slope towards the introduction of germline genetic modification in human medicine, which in turn could lead to the practice of genetic enhancement.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Human Gene Editing: A Global Discussion

Françoise Baylis explains “On Human Gene Editing: International Summit Statement” to the participants at the American Association for the Advancement of Science 2016 Annual Meeting.

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Last December, at the end of the three day International Summit on Human Gene Editing in Washington D.C., the Organizing Committee issued a closing Statement. This statement included four discrete conclusions. As the science and politics continue to evolve, a quick refresher is in order.

First, the Committee formally endorsed basic and preclinical research on any and all human cells, provided this was done in accordance with “appropriate legal and ethical rules and oversight.” This would include lab research on somatic cells (i.e., body cells whose genomes are not transmitted to subsequent generations) as well as research on eggs, sperm and human embryos (i.e., germ cells whose genomes are transmitted to subsequent generations if they are used in reproduction).

This conclusion demonstrated approval for past and forthcoming gene editing research involving human embryos. Accordingly, the experiment involving the editing of human embryos published in April 2015 by a group of Chinese scientists would be considered “legitimate.” This is not a comment on the ethics or the science of the research. This is merely to say that the research in non-viable human embryos using CRISPR-Cas9 technology to “repair” the HBB gene that can cause beta-thalassemia was done in accordance with applicable rules in China (and, for that matter, applicable rules in a number of other countries). Similarly, the research approved in February 2016 by the Human Fertilisation & Embryology Authority in the United Kingdom, to better understand the basic biology of human development, would also be considered “legitimate.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Genetic enhancement of unborn children. Is it ethically acceptable?

Using techniques aimed at “improving” the human being, so-called genetic enhancement raises objective ethical problems. This has now been extended to the prenatal period, with the use of genetic techniques in unborn children. The author of the article in question, Ryan Tonkens, calls this type of enhancement “prenatal genetic moral enhancement” (Journal Medical Ethics 41; 245-251, 2015). In the article, Tonkens performs a comprehensive review of the ethics of these practices, concluding that “prenatal genetic moral enhancement” is “morally problematic and ought not to be pursued”.

La entrada Genetic enhancement of unborn children. Is it ethically acceptable? aparece primero en Observatorio de Bioética, UCV.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.