Just Genes: The Ethics of Genetic Technologies


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Pro: Research on Gene Editing in Humans Must Continue

At the other end: the transhumanist philosophy, which sees scientific advances as suitable tools for remoulding Homo sapiens into something better and more noble — from humans to posthumans. This movement even has a term for its opponents: biofundamentalists. Niklas Juth , who researches medical ethics at the Centre for Healthcare Ethics, Karolinska Institutet, thinks that there are grounds to criticise the arguments of both these groups. One such is the argument that it is unnatural or that we are playing God — that people would be crossing the boundaries that nature or God have given us.

Another is the slippery slope argument: that if we take this step now, we are going down a path that inexorably leads to dystopia. And active euthanasia was perceived as a slippery slope to a murder state 30 years ago. That's as far as I'm prepared to agree with the transhumanists.

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But should a powerful genetic tool be released freely into the marketplace, there is a risk that the economic upper class would in the long term become a genetic upper class. Maybe cognitively superior to the rest of us. They could turn us into slaves! Niklas places himself somewhere in the less spectacular middle ground in terms of his opinion, where the use of CRISPR is permitted but carefully regulated.

CRISPR, which stands for clustered regularly-interspaced short palindromic repeats, is a type of DNA sequencer that is naturally present in the immune defence of bacteria. Cas9 cuts up the harmful DNA. The magazine Medical Science Medicinsk Vetenskap is published by Karolinska Institutet and targets the general public interested in medical science. New genetic technology raises ethical questions. Giulia Gaudenzi, credit: Ulf Sirborn.

There has been rapid development since then. Image: NIH. Fredrik Lanner, credit: Ulf Sirborn. Niklas Juth, credit: Stefan Zimmerman. The genetic scissors in short CRISPR, which stands for clustered regularly-interspaced short palindromic repeats, is a type of DNA sequencer that is naturally present in the immune defence of bacteria. The magazine Medical Science The magazine Medical Science Medicinsk Vetenskap is published by Karolinska Institutet and targets the general public interested in medical science.

The list of current and upcoming opportunities will develop as the planning process evolves, so make sure to check back often.

Ethics of Human Gene Editing

Social Media We are using the genomics hashtag on Twitter and Facebook to enable people to easily follow and contribute to our strategic planning and to connect related conversations over time. Please feel free to share your ideas using this hashtag.

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Town Halls We plan to convene a series of town halls across the United States to capture input about our strategic planning process. The town halls will involve members of the scientific and medical communities, non-profit and private sectors, grantees, and members of the public. Satellite Meetings at Scientific Conferences To take advantage of existing opportunities to hear from our stakeholders, we intend to convene satellite meetings at scientific conferences that members of the genomics community typically attend.

A catastrophe has global, widespread effects, she said, not ones that affect one family.

Genetically modified babies given go ahead by UK ethics body

Humans are not that promiscuous. We've had a few characters in history, usually conquerors like Genghis Khan, that manage to insinuate their DNA into large parts of the modern population. But most of us do not have that good a social life. Because of the uncertainty, the dominant scientific view is to have a temporary moratorium on tinkering with germline cells for clinical use. But if editing human embryos is eventually shown to be safe and effective, what then? Will there be any reason not to use it to eradicate genetic diseases, such as Huntington's, cystic fibrosis, and sickle cell anemia?

Barbara Evans, of the University of Houston Law School, said that the Food and Drug Administration framework for investigational drugs might be a way to control how germline editing is used. Some people would say, though, largely on the slippery slope [argument], it's wonderful to help out this yet-to-be-born child, but what we're doing is establishing a principle, and that's a principle we shouldn't establish. He points to other issues that have received less attention that he views as more ethically worrisome, such as creating artificial genes in the laboratory for clinical use or transferring genes from other species to humans.

If germline editing were approved, most seem to agree that it would be very difficult to limit its use to disease prevention. George Church, a professor of genetics at Harvard University Medical School, told the summit that the real battle would not be between editing somatic cells and germline cells but over where to draw the line between disease prevention and enhancements.

The point is [that enhancements] will come in through very serious disease and they will be spread by somatic gene therapies. Historian Daniel Kevles, an expert on eugenics, says that the line between disease prevention and human enhancement can blur or even change over time. But eugenics is eugenics, says Johnston, of Hastings. For many in the religious community, such choices present serious moral concern. Bioethicist Hille Haker, of Loyola University Chicago, speaking at the summit, noted that assisted reproductive technology, once seen as a tool to aid infertile couples, has morphed into a marketable product.

The safety risks and predictable harms outweigh the benefits, she argued.

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Social scientists at the summit raised a host of other concerns regarding access and decisionmaking. The ranks of people with disabilities are much broader than the white middle class, which she said often serves as the default for patients. This view suggests that before a researcher goes about trying to eliminate, say, autism through genetic manipulation, people with autism should be at the table when the decision is made whether to proceed.


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  4. Bodies for Sale: Ethics and Exploitation in the Human Body Trade;
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Ruha Benjamin, of Princeton University, urged the summit to do a better job of bringing people with disabilities to the table when deciding whether to move forward with gene editing. Benjamin urged researchers to put the brakes on and avoid rushing to make decisions about issues of such complexity. However, those who have a genetic disease often do feel a sense of urgency. Mara Cray, 19, of Mount Laurel, New Jersey, who was born with cystic fibrosis, is hopeful that germline editing might someday help people like her.

Already, she has benefited from a new precision-medicine drug that dramatically eased the respiratory troubles that sent her repeatedly to the hospital, interrupting her high school education. From her perspective, technical uncertainty should not be cause for delay. We're not going to know until we try. Besides, she added, wealthy people wanting to create designer babies will most certainly find a way. Why not bring the technology to those with serious disease, too?

Not everyone agreed with the summit committee's position that research should move forward.


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Haker called for a 2-year moratorium on basic research and a United Nations—backed ban on human germline editing. Some 40 nations already discourage human germline editing, including 15 of 22 European nations that prohibit it.

Lanphier, who spoke out against germline editing in Nature last year, says that although he was pleased with the summit, he still cannot imagine there ever being a therapeutic need that would justify germline editing over other available tools. He and others say that somatic cell editing which his company develops , along with in vitro fertilization and prenatal genetic diagnostics, are safer, surer methods. Lanphier hopes that germline editing will be banned, although he fears its inevitability. On a question of this magnitude, most seem to agree that there needs to be broad societal consensus—globally if possible—on what is permissible.

But how to educate the public and solicit societal input is not clear. A committee charged by NAS with writing a report on human genome editing by the end of was making an effort by inviting religious leaders and patient advocates to a hearing in February.

Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies
Just Genes: The Ethics of Genetic Technologies Just Genes: The Ethics of Genetic Technologies

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