Tuesday, February 13, 2018

Report for Feb 15 | Jonathan Cannon & Logan Eley


In our presentation we will look into Conor Friedersdorf's article in The Atlantic. (link below)
Here is a short quiz just to make sure you've read it if you want to claim an extra run for Thursday.
1. Rather than antibiotics, what did 4-year-old Natalie's parents choose to use to treat her infection?
2. What was the outcome for Natalie and for her parents?
3. T/F: Legislative majorities believe that parents should be put on trial for withholding mainstream medical treatment when a child suffers greatly or dies as a result.
4. What was the name of the 2-year-old boy that did of bowel obstruction?
5. T/F: Can scientists use natural enzymes to target and snip genes with unprecedented accuracy?
6. T/F: In future debates regarding "designer babies" gene editing is likely to be the least controversial use.

Here are some supplementary links related to this topic if you're interested in them.

DQs:
-What are your instincts about if or when you would punish gene editing holdouts?
-If the procedures were as cheap as antibiotics, would it be unethical to deny human gene editing to avert a serious disease?
-What if gene editing would reduce the risk of a typically fatal cancer by only 90%? 50%? 5%?
-Would it matter how much the procedure cost?
-How would you define mainstream medicine?
==
Will Editing Your Baby's Genes Be Mandatory?
An ethical dilemma from the near future

CONOR FRIEDERSDORF
APR 14, 2017

Designing a baby, or editing the genes of an unborn child, strikes many as risky, unseemly, unnatural, unethical, or likely to lead to a dystopian future of one sort or another. Still, I predict that within my lifetime, the United States will arrest, try, and convict some parents for refusing to edit the genes of their child before he or she is born.

Consider what is now punished. In The Kindly Inquisitors, Jonathan Rauch’s defense of liberal free-speech norms, the author noted that the liberal, scientific view of knowledge, which he was championing, asserts a unique claim to legitimacy in the modern West. Lest anyone doubt his characterization, he cited the fate of Christian Scientists:

On December 4, 1984, a 4-year-old girl named Natalie died very painfully of an infection. The cause was a common bacterium that is almost always cured by antibiotics. Her parents, however, did not use antibiotics. They used prayer. To many of us, that sounds preposterous. But imagine what it is to believe fervently in the healing power of your Lord. Imagine that your child is sick, and you want the best treatment, the one that is right and most likely to work. That treatment is prayer, or so you believe with all your heart. And that treatment you use. “We say those parents chose the method of care they felt was most likely to make their child well,” a church official said; and unquestionably he was right.

Then the child dies, and the parents are charged with manslaughter and child endangerment. Over the last ten years there have been dozens of such cases. In 1990 a two-year-old boy named Robyn died of a bowel obstruction after a five day illness; his parents, David and Ginger Twitchell, were convicted of manslaughter and sentenced to ten years’ probation. Pictures in the paper showed the mother, after the trial, cowering in her husband’s arms as he faced news photographers. David Twitchell said, “If I try a method of care I think is working, I will stick with that. If I think it’s not working, I will try something else.” By his own lights, he had tried his best for his child. Anyone who did not happen to share the worldview of medical science could only view the prosecution and conviction of the Twitchells as the most blatant kind of scientific imperialism. Sure, in Robyn’s case and Natalie’s the prayer treatment had failed. But sometimes antibiotics and surgery fail, too. When surgery fails, should parents be put on trial for not having first tried prayer?

Almost no one believes that parents should be put on trial for not having tried prayer––but legislative majorities do believe that parents should be put on trial for withholding mainstream medical treatment when a child suffers greatly or dies as a result. And the medical treatments that are considered mainstream will change over time.

Now that scientists can use natural enzymes to target and snip genes with unprecedented accuracy, “it seems likely that gene therapies––eliminating mutant genes that cause some severe, mostly very rare diseases––might finally bear fruit, if they can be shown to be safe for human use,” The Guardian reported earlier this year in an article on designer babies. “Clinical trials are now under way.”

Reporter Phillip Ball quoted one expert as follows:

Because of unknown health risks and widespread public distrust of gene editing, bioethicist Ronald Green of Dartmouth College in New Hampshire says he does not foresee widespread use of Crispr-Cas9 in the next two decades, even for the prevention of genetic disease, let alone for designer babies. However, Green does see gene editing appearing on the menu eventually, and perhaps not just for medical therapies.

“It is unavoidably in our future,” he said, “and I believe it will become one of the central foci of our social debates later in this century and in the century beyond.”

In those future debates, gene editing to prevent disease is likely to be the leastcontroversial use. Some folks will grant that trying to reduce disease is a reasonable course even as they argue against gene editing for cognitive or aesthetic enhancement. Others will remain wary of editing the genes of their child. If early gene editing efforts cause harm past some threshold, the backlash may render my prediction incorrect. Barring that, it seems likely that gene editors will gain the ability to safely prevent some awful diseases, and that the holdouts who fear or morally object to their methods will dwindle more and more with every passing year.

Once they’re no more numerous or influential than, say, today’s Christian Scientists, the relevant politics will be quite changed. Holdouts who fear that gene editing is putting humanity on a slippery slope to disaster or who have religious objections to the technique or who just prefer “the old-fashioned way” in their gut will conceive a child. If he or she is healthy all will be fine. But some holdouts will give birth to a child with a painful or fatal condition that could have been prevented.

People will get angry at those parents and seek to punish them.

Or at least that is the course I foresee (even though there is arguably an ethical distinction between refraining from editing the genes of a future human and denying essential medical treatment to an already living human, who is understood to have individual rights independent from or not entirely subject to the beliefs of their guardians).

Regardless of whether you agree with my prediction, I’d like to know what you think about the ethics of this matter. A subset of readers will oppose punishing Christian Scientists today for, say, declining to allow the removal of a burst appendix. Such readers presumably oppose punishing the gene editing holdouts of the future, too.

So I am most curious about the views of readers who are presently okay with punishing parents who deny mainstream medical treatment to their children. What are your instincts about if or when you would punish gene editing holdouts? If the attendant medical procedures were as cheap and safe as a course of antibiotics, would it be unethical to deny a potential human gene editing to avert a serious disease? What if instead of a certainty of a serious disease, gene editing would reduce the chance of a typically fatal cancer by 90 percent? How about by 50 percent? 5 percent? Does it matter how much the gene editing technique would cost?

What other confounding factors, if any, should enter into the picture?

Nothing here should be construed to imply anything about my position. I’ve tried to avoid tipping my hand, save my belief that questions of this sort loom ahead for humanity. I’d like to see your stab at answers. Email conor@theatlantic.com if you’re willing to share.

11 comments:

  1. Alternate Quiz Questions:
    1. What did the church official say about the decision?
    2. Gene Therapies eliminate what kind of genes?
    3. T/F In future debates gene editing to prevent disease is likely to be the least controversial use
    4. Can painful/ lethal diseases be prevented this way?

    Discussion questions:
    1. Is it ethical to require this or should people have a choice?
    2. How will/could it be enforced?
    3. Would you edit your child's genes?
    4. At what point would this editing occur? 1st, 2nd, 3rd trimester?
    5. Would it be an option to edit other things or would we be limited to diseases?
    6. If this doesn't gain popularity will it become a business similar to plastic surgery where it is seen as a luxury?

    Rsponses:
    1. I wouldn't punish those who didn't do it. I feel like this is on another level from refusing antibiotics.
    2. No because people's value systems are different and we have a right to a degree to make these decisions.
    3. That would be wonderful, but you have to consider the other implications.
    4. That would play a huge factor. Who could afford it? Would it be a right? If it isn't readily available to everyone that would be wrong.
    5. Mainstream medicine is what we are used to seeing everyday in hospitals.

    Here is an article on the other side of this one:
    https://www.nytimes.com/2017/08/04/science/gene-editing-embryos-designer-babies.html

    ReplyDelete
  2. We'll need a few more quiz questions, guys.

    ReplyDelete
  3. Alternate quiz answers:
    1.The church official said that he felt “those parents chose the method of care they felt was most likely to make their child”
    2.mutant genes
    3.True
    4.Yes
    Discussion questions
    -If the procedures were as cheap as antibiotics, would it be unethical to deny human gene editing to avert a serious disease? I don’t think it would be unethical to deny human gene editing if the problem could be solved with antibiotics. I feel this way because gene editing is a serious thing that will have a lasting effect, and it is a high-risk procedure. Additionally, boundaries must be set and if we change genes for one minor thing what other minor illnesses would we alter genes for?
    -Would you edit your child’s genes? I wouldn’t edit my child’s genes because that could lead to other unknown problems. If any issue arose, I would just address it as it came to the best of my ability.
    -If this doesn't gain popularity will it become a business similar to plastic surgery where it is seen as a luxury? I believe that it has the potential to become a business similar to plastic surgery, but I doubt it would become one. My reasoning behind this is because it would be under more scrutiny than plastic surgery and society would be less accepting of it if its not a popular or common thing.
    -Would it matter how much the procedure cost? I think it does matter how the procedure would cost because how could you possibly prosecute people for not having genes altered if they didn’t have to do it in the first place. Additionally, there could also the be formation of a monopoly if this procedure became a big thing in society.

    -How would you define mainstream medicine? I would define mainstream medicine similar to how Cameron defined it as the type of medicine used now that uses drugs and treatments to cure illness. It could also be described as conventional medicine as well.
    Links:
    https://www.horizondiscovery.com/gene-editing?utm_source=bing&utm_medium=cpc&utm_campaign=Gene%20Editing%2FCRISPR&utm_term=gene%20editing&utm_content=Gene%20Editing

    https://www.nytimes.com/2015/12/04/science/crispr-cas9-human-genome-editing-mora

    https://www.nytimes.com/2015/12/22/science/gene-drives-offer-new-hope-against-diseases-and-crop-pests.html?module=Promotron&region=Body&action=click&pgtype=article&mtrref=undefined&gwh=9402E176F41899484DDE9976B2077083&gwt=paytorium.html?module=Promotron&region=Body&action=click&pgtype=article

    Alternative Quiz Questions
    True or False. “Ronald Green of Dartmouth College in New Hampshire says he does foresees widespread use of Crispr-Cas9 in the next two decades”

    ReplyDelete
  4. On February 13 during our peripatetic session, we discussed assorted topics. These topics included the “lifeboat” scenario, the extension of life/age, and the growth of organs. When discussing the lifeboat scenario, the majority of us agreed that we wouldn’t kill anyone if we had the option and that we would make the rations last as long as we could. We also discovered that we didn’t single a certain individual out based on their age or circumstance. Secondly, Cameron, Joseph, and I were discussing an aspect of General Physiology that we had learned and how it tied into the presentation that was given the previous Thursday. In class, our teacher had expressed that Alzheimer’s is based on the make up of the body and it just depends on how long it takes for the brain to get to that state. He said that it could take 70 years,100 years, or 200 years. At that point we considered if we lived longer what other diseases would accumulate along with our accumulation of life. Lastly, we discussed how different organs could be grown in the bodies of other animals and if the growth of certain limbs was ethical vs the growth of other limbs being unethical from the basis of the life of the animal it is being grown on or in. The last subject interested me the most, so I read a few articles about it. http://www.sciencemag.org/news/2017/01/human-organs-grown-pigs-not-so-fast
    https://www.mercatornet.com/features/view/is-it-ethical-to-grow-human-organs-in-animals/19350

    ReplyDelete
  5. On February 13, Dr. Oliver, a few classmates, and I talked about several different topics such as how to deal with religious patients withholding treatments because of their beliefs and how to be a parent or some kind of a solution to foster care and orphanages.

    ReplyDelete
  6. Discussion Questions:

    1.) During our meeting outside on 13, Feb, I asked some people what made their life most enjoyable and quality. Here I pose the same question, what brings you joy and peace in life? Do you think the same is true in general for most people, or does it differ widely?

    2.) Should gene therapy, or editing rather, be an option for potential parents with genetic predisposition to disease? Where do we draw the line? What is the "grey area" between preventing disease and giving someone an advantage.

    3.) Do you think the government should currently be funding more research into gene editing? What can we REALLY do with this technology? Is our ideation of what is perfect per se in accordance with nature? Or is toying about with genetic diversity a bad idea?

    ReplyDelete
  7. During the discussion on Feb 13, the small group inside the classroom talked about a few topics. We discussed vaccination ethics, parental indoctrinations and how we'd ensure that children receive a well-rounded view of the world through their parents and other influences.

    ReplyDelete
  8. Alternate Quiz Questions:

    1. What is the name of the book and author that Conor Friedersdorf references to regarding the defense of liberal free-speech norms?
    2. What were the names of baby Robyn parents?
    3. Who did reporter Phillip Ball quote?
    4. List two questions Conor Friedersdorf challenges the reader to answer.
    5. Pretend to submit your answer to one or both questions. What is your reply?

    DQ Response:
    What are your instincts about if or when you would punish gene editing holdouts?

    My “instincts” lead me to say no based upon free will. As David Rock, wrote in Psychology Today, I believe humans have the “capacity to change ourselves”1. But if there are alterations or omissions at the cellular level of a conception then, in my opinion, that human has been robbed of their free will. How will we ever know that individual’s true potential; whether positive or negative?

    It seems to me that these topics are only issues when tragedy arises. But, what about when doctors can only claim a “miracle” has occurred when the impossible becomes possible with no medical explanation? One story that caught my attention was that of Shirley, who was diagnosed with stage IV cancer and was given 90 days to live. Yet, 120 days after her diagnosis, her cancer could no longer be detected. Here is her story: (http://www1.cbn.com/stage-iv-cancer-healed).

    In Shirley’s case, there was no fatality due to cancer, so would have gene editing benefited her? Maybe yes and maybe no. Sure they could have all been spared the emotions and expense of the situation. Yet, what new concept or invention has the potential of ascending from such an experience, either from the patient or from the medical point of view? Which brings us back to free will. By altering free will how could we ascend to our true potential, again whether positive or negative?

    1 Rock, D. (May 24, 2010). Is Free Will Real? Better Believe It (Even if it’s not). Retrieved from https://www.psychologytoday.com/blog/your-brain-work/201005/is-free-will-real-better-believe-it-even-if-its-not)

    ReplyDelete
  9. Class Discussion on Feb. 13th:
    I stayed inside during our discussion groups. We talked about the ethics of vaccination; specifically we discussed the idea some people hold of Autism being caused by vaccinations. As well as, how this idea can still be believed even though the claim has been disproven and additionally how lack of vaccination harms the person and endangers others in the public. And secondly, we discussed parental upbringing, what makes a good, and parental indoctrination; we talked about if it would be possible to require some sort of licensing before a person can be a parent and how a parent should guide their child to become their own person rather than an extension of the parent.

    Alternate Quiz Questions for presentation 2/15:

    1. (T/F) The author believes that in his lifetime the U.S. will arrest, try, and convict some parents for refusing gene editing.
    2. What did the church official say about the parents’ choice of care?
    3. (T/F) In future debates, gene editing to prevent disease is likely to be the least controversial use.
    4. (Y/N) Does Ronald Green of Dartmouth College foresee the use of Crispr-Cas9 in the next two decades?

    Potential Discussion Questions:

    • With gene editing to treat or cure diseases becoming possible, should we allow gene editing to create ‘designer babies’?
    • Can we ethically punish people for having different beliefs on what is considered appropriate treatment for a child/dependent they care for?

    ReplyDelete
  10. Answers for alternative questions:
    1. It said parents choose the method of care they felt was necessary for their child.
    2. Mutant genes
    3. True
    4. Yes

    ReplyDelete
  11. Answers for alternative questions:
    1.T
    2.F
    3.T
    4.Y

    ReplyDelete