Three Parents and a Baby

There’s an interesting post up on the New York Times’ Well Blog about children with three biological parents—in this case, three genetic parents.  Here, a mother and a father provided chromosomal DNA (i.e., the standard 23 chromosomes from each leading to the diploid 46 chromosomes), and another woman provided the egg, which included DNA found in the mitochondria (the “powerhouses of the cell” which are found in the cytoplasm of the egg).  The idea behind this practice is that women with problems in their mitochondria can still have healthy children with their own genetic material.  While it’s not that unusual to talk about children with three biological parents (two genetic and one gestational, as happens frequently with a surrogate mother or egg donor), we don’t often think on examples with three genetic parents (and the potential for a fourth biological (gestational)).

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“How I Stopped Worrying and Learned to Love Test Tube Meat (and Started Thinking It May Be Immoral NOT to Eat It)” Or “Hooray For Chickie Nobs!!??!!”

If you were watching television this week you may have seen this clip of a taste test for hamburger meat grown in a “test tube” in London discussed here. The meat was grown from stem cells from existing cows used to grow 20,000 strands of tissue. Costing more than $330,000 to make, with funding by google Co-Founder Sergey Brin, the day where this will be available at your grocery store or served at your fast food franchise is far away. But it may come sooner if we conclude that there may be a moral duty to develop and eat this kind of meat rather than animal-grown meat and press our governments to start funding this work. What is the morality of test tube meat consumption?

Sometimes narrative can be a way into ethics so consider this bit from one of my favorite novelists (and Canadian public intellectuals) Margaret Atwood from her novel Oryx and Crake. She imagines a dystopian future that includes the the consumption of “Chickie Knobs” in one scene:

“This is the latest,” said Crake.

What they were looking at was a large bulblike object that seemed to be covered with stippled whitish-yellow skin. Out of it came twenty thick fleshy tubes, and at the end of each tube another bulb was growing.

“What the hell is it?” said Jimmy.

“Those are chickens,” said Crake. “Chicken parts. Just the breasts, on this one. They’ve got ones that specialize in drumsticks too, twelve to a growth unit.

“But there aren’t any heads…”

“That’s the head in the middle,” said the woman. “There’s a mouth opening at the top, they dump nutrients in there. No eyes or beak or anything, they don’t need those.”

To be clear the test tube meat unveiled earlier this week is not a Chickie Nob, it is grown from stem cells rather than being a cow with extra parts and brains missing (Atwood is silent on some characteristics of the Chickie Nob that may matter ethically such as whether it feels pain or is sentient), but I think many will react to the test tube meat the same way: disgust. Some in bioethics, like Leon Kass, think there can be a “Wisdom of Repugnance.” In my own work I have been a persistent skeptic on this theme. For me repugnance and disgust are good and should be cultivated as reactions for that which we deem immoral, but should be broken down and overcome for those things which we conclude are morally worth pursuing. Thus repugnance is a tool whose proper deployment depends on prior moral conclusions. In the case of test tube meat, whatever repugnance we feel is one we should get over and media, government, etc, should help us do so.

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An Open Letter From a Genomic Altruist to a Genomic Extrovert (Re-Identification Symposium)

This post is part of Bill of Health‘s symposium on the Law, Ethics, and Science of Re-Identification Demonstrations. You can call up all of the symposium contributions here. We’ll continue to post contributions throughout the week. —MM

Dear Misha:

In your open letter to me, you write:

No one is asking you to be silent, blasé or happy about being cloned (your clone, however, tells me she is “totally psyched”).

First things first: I have an ever-growing list of things I wish I had done differently in life, so let me know when my clone has learned how to read, and I’ll send it on over; perhaps her path in life will be sufficiently similar to mine that she’ll benefit from at least a few items on the list.

Moving on to substance, here’s the thing: some people did say that PGP participants have no right to complain about being re-identified (and, by logical extension, about any of the other risks we assumed, including the risk of being cloned). It was my intention, in that post, to articulate and respond to three arguments that I’ve encountered, each of which suggests that re-identification demonstrations raise few or no ethical issues, at least in certain cases. To review, those arguments are:

  1. Participants who are warned by data holders of the risk of re-identification thereby consent to be re-identified by third parties.
  2. Participants who agree to provide data in an open access format for anyone to do with it whatever they like thereby gave blanket consent that necessarily included consent to using their data (combined with other data) to re-identify them.
  3. Re-identification is benign in the hands of scholars, as opposed to commercial or criminal actors.

I feel confident in rejecting the first and third arguments. (As you’ll see from the comments I left on your post, however, I struggled, and continue to struggle, with how to respond to the second argument; Madeleine also has some great thoughts.) Note, however, two things. First, none of my responses to these arguments was meant to suggest that I or anyone else had been “sold a bill of goods” by the PGP. I’m sorry that I must have written my post in such a way that it leant itself to that interpretation. All I intended to say was that, in acknowledging the PGP’s warning that re-identification by third parties is possible, participants did not give third parties permission to re-identify them. I was addressing the relationship between re-identification researchers and data providers more than that between data providers and data holders.

Second, even as to re-identification researchers, it doesn’t follow from my rejection of these three arguments that re-identification demonstrations are necessarily unethical, even when conducted without participant consent. Exploring that question is the aim, in part, of my next post. What I tried to do in the first post was clear some brush and push back against the idea that under the PGP model — a model that I think we both would like to see expand — participants have given permission to be re-identified, “end of [ethical] story.” Continue reading

Caplan on Cloning Human Embryos

Art Caplan has a new column out spurred by the announcement that researchers at Oregon Health Sciences University have successfully cloned human embryos.  Recognizing the possible ethical concerns and calling for immediate bans on human reproductive cloning (not cloning for stem cell research), Caplan hopefully notes: “Through cloning you can take a disabled or sick person’s DNA from one of their body cells, insert it into a human egg from which the DNA has been removed, fuse the cell electrically (the technique used in Oregon) and create an embryo from which cells can be grown that are identical matches to what the sick or disabled person needs.”

Take a look at the full column here.

Cyborg Bugs and Glow-in-the-Dark Cats

That’s what CNN called yesterday’s report with science writer Emily Anthes about her new book, Frankenstein’s Cat, which examines “genetically modified this, or cloned that,” as she put it, or “creatures that combine electronic bits and biological ones.” Wrestling with the ethics of such cases, Anthes explains, “reveals that we’re deeply conflicted about the role that animals play in our lives.” Yet she laments that this tension supplies no satisfying answers to underlying questions like “Is this unnatural?” and would “that make it wrong?”

Our confusion lies, I’ve suggested, in the failure of animal welfare discourse to capture the sense many of us share that animal “nature” has value apart from its happiness or well-being. If its welfare were all that mattered, then we shouldn’t be troubled by animals designed to experience less frustration living in the conditions for which they’re destined. Consider three examples of designer animals that are currently being developed: cows with stunted sentience, less apprehensive of going off to slaughter; chickens that lack nesting instincts, more satisfied to a life confined to laying eggs in a battery cage; and pigs without legs, better suited for a sedentary existence as ham and bacon in potentia.

The dominance of the animal welfare view obscures a reason to resist such creations: to preserve animal integrity. Cows should be able to fear danger, pigs to play in the mud, and chickens to peck about in the sand, according to this view, less because those capacities make the animals happy than because they are integral to an intrinsically valuable way of being. To deprive a cow of its responsiveness, or a pig of its limbs, or a chicken of its proclivity for pecking would, on this account, violate its essential “cowness” or “pigness” or “chickenness,” even if those animals were perfectly content in their designated roles.

For thoughts on why animal nature may indeed be worth preserving, and implications for conventional breeding (e.g., dogs for companionship, or horses for racing), and what all of this  means for designer children and embryonic stem cell research, check out the article.

Twitter Round-Up (1/20-1/26)

By Casey Thomson

Though simply the consequence of bad translation, the story of the Harvard geneticist George Church looking for a woman to act as surrogate for a Neanderthal clone shocked the internet bioethics world. A look at the problems with this hypothetical situation is just one of the components of this week’s Twitter Round-Up.

  • Frank Pasquale (@FrankPasquale) linked to an opinion piece discussing the reasoning behind the United States’ place in the world rankings of life expectancy at different stages of life. The news is a big hit to ideas of American exceptionalism: according to a report by the National Research Council and the Institute of Medicine, Americans have a substantially higher death rate for those younger than 50 as compared to Western Europeans, Canadians, Japanese, and Australians, but once they reach the age of 80, they have some of the longest life expectancies globally. (1/20)
  • Arthur Caplan (@ArthurCaplan) shared his article on why Neanderthal cloning is a bad idea, both in terms of safety and in terms of avoiding cruelty. (1/22)
  • Arthur Caplan (@ArthurCaplan) posted a news story on the reopening of bird flu experimental procedures for vaccine creation. Caplan was quoted in the article as stating: “I have no issue with restarting the research but some issue with where they are going to publish it and where they present it because bad guys can use it too.” (1/23)
  • Daniel Goldberg (@prof_goldberg) included an evaluation as to the medical disparities occurring in Colorado, particularly between races. The article emphasized in its conclusion that the existence of the disparities themselves is quite clear, but discussion on how to erase such differences is noticeably absent. (1/23)
  • Michelle Meyer (@MichelleNMeyer) retweeted a post that attempted to quantifiably compare the quality of care in Medicare options, namely whether Medicare Advantage plans 1) will eventually shortchange patients by skipping out on care quality because of profit motive or 2) have incentives to improve care quality because of the newly implemented systematic quality monitoring, where poor ratings impact them financially. The author found that most existing data makes the second theory more compelling, though the amount of data regarding the subject in general is largely lacking. (1/24)
  • Michelle Meyer (@MichelleNMeyer) also shared a link to an explanation of the intricacies of “personalized regulation” in medicine, which aims to preserve patient choice in an era leaning more and more towards paternalistic medical oversight. Understanding that patients may choose to make rational decisions that diverge from the community or committee consensus is key towards improving medical care to better reflect patient wants, and rights. (1/24)
  • Arthur Caplan (@ArthurCaplan) included a story on the large imbalance in misconduct reports in research between the genders. Men overwhelmingly led the charge, with only nine women out of the 72 faculty members who committed research misconduct. (1/24)
  • Michelle Meyer (@MichelleNMeyer) additionally shared a letter written by the Editor of The Hastings Center’s Bioethics Forum on the reasoning behind publication of a controversial article on the social pressures leading to obesity. The letter calls for the importance of recognizing that publication means that an article contributes to the larger debate on an issue, though does not affirm that the publication medium agrees with the views espoused within; it also encouraged responses to the ideas of the article. (1/25)
  • Stephen Latham (@StephenLatham) posted a video link from Comedy Central on the perils of WebMD and vegetarianism. (1/25)

Note: As mentioned in previous posts, retweeting should not be considered as an endorsement of or agreement with the content of the original tweet.

Fixing Genes Using Cloning Techniques

One more from Art Caplan:

Fixing genes using cloning technique is worth the ethical risk

A team of scientists at the Oregon National Primate Research Center and the Oregon Health & Science University are reporting a remarkable advance in the treatment of inherited genetic disease in the journal Nature.

They show it is possible to repair a tiny part of a human egg cell that, when broken, causes a host of awful inherited genetic diseases.  Those diseases cause disability and the death for many children and adults.  What is equally remarkable is that the treatment they report is illegal in Britain, Germany, Costa Rica, Norway and Sweden and would be illegal to provide using federal dollars in the United States.

What did the Oregon scientists do?  And why is it so ethically controversial?

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