That’s really super, supergirl (part 2)

6 12 2018

I spent a fair amount of time in the last post going over the technical aspects of gene transfer, in large part because so much of the concern about the prematurity of Jiankui He’s work centers on those technical aspects. (Ed Yong at The Atlantic offers a terrific roundup of those and other concerns; he also collected a snapshot of initial responses to He’s announcement.)

I want to focus on two, different, questions about germline gene transfer: the point of such gene editing, and what it means for those who’ve been so edited.

First, the point. If your concern is with preventing single-locus (Mendelian) disorders, there’s a much more straightforward way of dealing with the risk: test the embryo for the presence of the lethal genes discard those which test positive (two lethal recessives or one lethal dominant).

This process, known as preimplantation genetic diagnosis, is available at most, if not all, fertility clinics in the US, and generally costs in the low thousands; in fact, some of those who don’t have fertility problems choose to make use of assisted reproductive techs (ART) precisely so the embryos can be tested prior to transfer. If you know you and your partner are carriers for, say, cystic fibrosis, it’s a lot easier simply to transfer “healthy” embryos than to try to edit affected ones.

The upshot is that germline gene transfer for single-locus disorders is unnecessary. (The exception might be for those who create embryos which are all affected, but even then, it might be easier to create new embryos than to edit out problem genes.)

This brings up the question, then, for what germline gene transfer could be necessary, and it appears, at this point, nothing; it could be used only for improvement or enhancement.

Now, I should point out that “enhancement” is looked upon with some suspicion by many, many bioethicists, so using that term is. . . provocative. Still, it’s not unwarranted: He altered a normal (or non-disease) gene in order to enhance the offspring’s resistance to HIV. While it’s questionable as to whether the twins will actually have that greater resistance, the clear intent was create people with a capability they would not otherwise have had.

Otherwise known as enhancement.

I am a skeptic of genetic enhancement, not least because most of our traits are complex or multifactorial. Do you know how many genes are involved in your height? Over 700. Any guesses as to how many are involved in, say, intelligence? Your guess would, at this point, be as good as anyone else’s.

Furthermore, many of our genes are pleiotropic, which means that a single gene may be associated multiple traits. And let’s not even get into epigenetics, which is the study of the process by which environmental factors affect gene expression.

All of this means that attempts to edit our genomes in order to enhance the traits so many express an interest in enhancing (eg, height, intelligence, athletic ability) will not be straightforward. This doesn’t mean that all such edits will fail, but that success is likely far off.

There are some traits which are less complicated, traceable to one or a few genes, so it may be possible to fiddle with those genes, but even then there’d be concerns, as there is with the CCR5 gene He edited, that boosting one aspect of the gene’s expression (resistance to HIV) can cripple another (resistance to West Nile virus).

That germline gene editing may not, strictly speaking, be necessary, doesn’t necessarily mean there’s no point at all to it. Even an enhancement skeptic like me can recognize that not every use is automatically terrible, or that, in the case of an environmental disaster or pandemic, it could actually become necessary for species survival.

But we’re a long way away from knowing enough that such use can currently be justified.

Which brings me to the second point: what happens to those little girls, Nana and Lulu? Are they to be research subjects for the rest of their lives? Will their parents be required to offer them up for study? Will they ever be able to say no to such study? How much of their lives be known? Will they have any control over information about them?

And what about their offspring? Will their own children have to be studied? If, as seems probable, Nana and Lulu are mosaics, then there would certainly be interest in the inheritance of those mixed genomes.

If He’s work is not to be a complete waste, the girls should be studied. But how to balance the need/desire for knowledge about his experiment with their human rights and dignity? After all, they didn’t sign up for any of this.

I should point out that in some ways their birth parallels that of Louise Brown, the first IVF baby. No one knew if creating a human embryo outside of the body and then transferring it back to a woman would result in a healthy child, or whether IVF-offspring would themselves be fertile. (It wasn’t until Louise’s younger sister Natalie, also IVF-conceived, gave birth did we know that IVF babies could make babies the old-fashioned way.) In vitro fertilization (and a variation, intracytoplasmic sperm injection) was an experiment which could have ended in horror; that it didn’t has had the effect of minimizing just how great a leap it was.

So what will happen with Lulu and Nana? If all seems well with them, does that make it all okay? If not, then not?

And, again, how will we know? One of the criticisms of the fertility industry is just how much isn’t known: there is no database of children conceived via ART, nor of women who’ve taken fertility drugs. Yes, it is possible to do research on the health of these women and kids, some of which indicate increased risks to health. Is that work sufficient? It’s been 40 years, and it seems mostly okay; is that good enough?

We can’t go back and retroactively require that all ART babies be surveilled—I’m certainly not suggesting that—but would it make sense, going forward with gene-edited people, to have some way to keep tabs on their health?

Y’all know I’m a privacy crank, so even suggesting some sort of life-long surveillance makes my teeth itch, but if such research is to continue, then a necessary part of that research is information about the people who participated in it. Given that a central tenet of human subjects research protection is the right to withdraw from any study at any time, there’s no ethical way to require people who’ve been gene-edited to submit to lifelong study; it is not out of the question, however, to ask.

Anyway, back to Nana and Lulu, two new people who were created as a science experiment which many of us decry. Would it have been better had they never been born? Better, certainly, had He not plowed past the many cautions to mess with the embryos, but now that the girls are here, well, best to welcome them to the human race.

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Circus Maximus MMXVI: And a little bit not (I)

13 09 2016

Oh, to be of many minds:

Mind1: The bug-eyed conspiracists certain that Hillary Clinton is hiding, I dunno, a tumor/mainstream pundits who are more than happy to indulge the, well-this-certainly-plays-into-the-appearance-of-dishonesty are shoveling enough shit to cover the prairies from Kansas to Saskatchewan.

Woman has pneumonia, got dehydrated while standing in a crowd, had to be helped into SUV, is apparently recovering. Bummer for her, not a big deal.

Mind2: Hillary Clinton, if elected, will be the second-oldest person (after Reagan) to begin her first term. This doesn’t mean that she’s enfeebled now or will be during either (Inshallah) of her terms in office—but it does mean that she is, to be grossly generalistic, less robust than someone 20 years younger.

This is a legitimate concern—not an emergency, not a disqualifier—but, yes, a legit concern.

(And no, that Trump is a year older than her doesn’t make Clinton “young”, even in comparison.)

Mind3: That pundits and conspiracists (and, yeah, one of my neighbors who is terrified of Trump and so highly concerned about Clinton’s health) are keening into the high winds about both her health and her alleged penchant for dishonesty makes me wanna holler She’ll be fine! She’ll be fine! Her doctor says she’ll be fine!

It also sets me to muttering that no matter what she says or authorizes her doctor to release, she’ll be accused of lying.

Mind4: She probably will be fine; I doubt she’s lying.

That said. . . whether or not the so-called narrative of Clinton’s dishonesty—isn’t that a nice way to call someone a liar by implying Oh, look, everyone thinks she’s a liar—is accurate, it has, in fact, taken hold. While it’s possible-to-likely that a more comprehensive summary of Clinton’s current health (i.e, past few-t0-5 years) wouldn’t satisfy those who refuse to be satisfied, it also wouldn’t be a bad move, if only in giving her a ready answer to questions about her health.

Given that Trump is shameless, there’s no way that her release of info would shame him into releasing his. Nope, any Clinton release would be a defensive tactic against the press and, perhaps, a kind of reassurance to her supporters (including my anxious neighbor).

Mind5: Did you notice what I did, there? I doubt she’s lying. Gliiiiiiided right past that.

I went fairly hard the other day about tossing aside all concerns other that politics, thereby brushing away concerns about Clinton’s alleged dishonesty, not least because I do think the whole “narrative says so” is bullshit.

But I didn’t stress enough that I really don’t know. I mean, she’s been involved in politics for a very, very long time and seems as sincere as a politician could be, but it’s also clear that she’d rather not share every last bit of info about her doings, please and thank you.

What does that mean? I dunno. Since she’s on my side of the field I’ll be voting for her, regardless; if she were on the other side this would be yet another reason not to—but, honestly (snerk), this wouldn’t be the thing I’d latch onto about that opponent.

I mean, that Trump hasn’t released his tax returns isn’t in the top 50 of the worst things about him.

Mind6: Is it fair that Clinton’s getting her bell rung by the press and Trump isn’t?

No; so?

As I’ve banged on about repeatedly, there’s nothing fair about elections, winning is the only thing that matters, etc., etc.

Besides, in this case, the unfairness may be less that the press expect Clinton to answer their questions about her health but that they don’t expect the same from Trump.

Mind7: In other words, it is not unreasonable to expect candidates for the presidency to release information about their health.

A full release of all of their health records is unnecessary and, likely, unwise, but, again, a comprehensive summary should give manage to drive the screamers back to the fringes from whence they came.

As for those who think the candidates’ own docs can’t be trusted? Well, I like the ideas put forth by some doctors and ethicists for a (voluntary) independent evaluation of the candidates by a doctor or panel of doctors. How to go about this would need to be worked out, and it might need some tweaking over successive elections, but this would likely be an improvement over the  ad-hockery (and ad-hackery) of the current non-system of health disclosure.

Mind8: Even as I write that it’s reasonable to want some reliable info on the candidates’ health, I am uneasy with that expectation.

Again, most powerful person on the planet, but I think even the most powerful person on the planet deserves some privacy.

Not total privacy. Not total transparency. Something in between. I don’t know what that in-between would be. Something about recent (and relevant less-recent) past health, current health, yes. Chronic conditions. Medications.

What about psychotherapy? Marriage counseling? Would pastoral counseling count?

That’s too much, isn’t it? I mean, maybe not the fact of counseling itself, but certainly not any details. . . and, frankly, wouldn’t it be nice for that as-yet-unnamed panel of doctors to recommend a psychiatrist or psychotherapist be assigned to the White House as a matter of course? Is that already the case? Too much of a tangent. . . ?

And what about genomic testing? I mean, Jesus, that seems way too far, but what happens when (and it is a when, not an if) everyone is tested as a matter of standard medical protocol? Hell, a lot of people are already paying out of pocket for their own partial genomic profiles; what should be the response to demands that candidates be tested?

That’s just. . . oh, man, that would be a terrible idea—which is, of course, no barrier to its adoption.

All of these minds cannot be successfully melded; I have, in the end, only questions: How much privacy should a candidate, a president, have? What do we, as citizens, deserve (as opposed to merely desire) to know about those who would lead us?





I keep finding hate mail in the pockets of my coat

7 09 2015

Long ago I promised a follow-up to my various religious exemptions/one law/pluralism posts about how to preserve that pluralism.

This is not that post.

Instead, it’s a quickie follow-up to yesterday’s post about doing one’s job.

As I have mentioned ad nauseam, I am a hardliner when it comes to one’s work duties, namely, that if you’re unwilling, for whatever reason, to perform a job, then you should quit.

Yes, you can try to negotiate these duties, try to convince your bosses that their policies are wrong, but, in the end, if you can’t do the job, then you shouldn’t do the job.

The flip side of this, which I have only occasionally mentioned, is that what you do off the job should have no bearing on the job.

There might be some reasonable exceptions to this, but I’m pretty comfortable stating that those exceptions should be few and far between. You might be a racist piece of shit on your own time, but if you can keep it together while you’re on the clock, then that’s all that should matter.

Now, some might argue that someone who’s a racist piece of shit off the job is highly unlikely to keep it together on the job, but unless and until that person loses it, she should keep her job. Judge someone’s work performance by her work performance, and that’s it.

Furthermore, this oughtta be a law—and not just as a protection for the worker (who most needs it), but as a defense for the employer: I can’t fire someone you don’t like just because you don’t like ’em.

This, to me, is an obvious corollary to telling the Kim Davises of the world to suck it up: if there are limits to how far you may take your personal life into a job, then there are also limits as to how far a job may enter into your personal life.

This is not a position I would have taken when I was younger. Back then, I had notions of throwing my whole self into a job, of defining myself almost completely by the work I do. Now, however, while I do gain a sense of self from my work, I’m also aware of the necessity of boundaries—both as a practical matter and for my own mental health.

I really do love teaching, but I do it because I get paid. It’s a job which I need in order to pay the rent, and I don’t care for my employer to take into account anything about my ability to do the job except for my performance on the job.

And not that I have much going on, but I most definitely to do not want them poking around in my private life.

~~~

There’s a thing about living in a city in which you can see into your neighbor’s apartment or hear your neighbor’s conversations/sex/fights: You pretend that you don’t. Your (and your neighbor’s) privacy might be a kind of fiction, but it’s the kind of fiction that works in real life.

I think we should take the same approach to social media and on- and off-the-job behavior as well: If the person sitting next to you is fine at work, but after work engages in behavior you find repugnant or ludicrous, pretend that you don’t know. Just let it be.

A little bit of breathing room is good for all of us.





What’s your name?

6 01 2015

I do love me some privacy, but, mister, if you hold elective office you can’t complain when the local paper mentions you.

That mister (Kirby Delauter) is learning the hard way that shouting “leave me alone!” in public is a great way to get that public to look

In response to his Facebook complaint that Frederick News-Post reporter Bethany Rodgers dared mention his name without his authorization, and after he threatened to sue if she mentioned his name again, the paper responded in the best way possible:

Frederick News-Post

Frederick News-Post

They apparently mentioned his named 28 times—not including the header.

I look forward to his “that’s-my-name, don’t-wear-it-out” lawsuit.





Just slip out the back, Jack

28 10 2014

There oughtta be an app for that.

That’s never a sentence I thought I’d write, given that a) I don’t have a smart phone or tablet, and thus b) don’t use apps.

Still, after reading about California cops who nicked nude photos from women’s phones, I thought, well, wouldn’t it be possible to create an app which, when you entered a particular password, would present a Potemkin version of your phone?

I mean, this already must exist, right? Somebody who was upset by TSA or border patrol or law enforcement snooping of laptops must have figured out a way to get around directives to lay bare their files by coming up with looks-so-real dummy drives, a kind of fronting which makes it seem as if some (real) files represent all files.

I know fuck-all about either hardware or software, but I have heard of mirror disks and disk partitioning, so shouldn’t it be possible to fake out a snooper by calling up a bland version of a phone or table in place of the real one? Or by asking that question am I just demonstrating that I know fuck-all about hardware and software?

In any case, a decent Potemkin app would also have to dummy up the data on storage space, and, unlike the infamous villages, appear from all angles to be real. Users, too, would have to include enough info in the bland version to make it seem real, so the app would have to make it easy to assign anodyne status to photos, messages, and whatnot. And given that many people don’t lock their devices between active use, perhaps the app could be have a default version, such that the bland drive is what appears after the phone is aroused from sleep.

It wouldn’t be foolproof, regardless, especially in cases when one’s device is confiscated: with enough time, techs could presumably figure out how to get around the false front.

But sometimes fronting is all you need to get past the nosy cop with your privacy intact.

So, app-people, if you haven’t already done this, get right on it!

And if you already have, well, never mind.





Every move you make

1 08 2013

Move along, people, nothing to see here.

Yeaaaah, not so much:

Because who wasn’t reading those stories [about the Boston bombing]? Who wasn’t clicking those links? But my son’s reading habits combined with my search for a pressure cooker and my husband’s search for a backpack set off an alarm of sorts at the joint terrorism task force headquarters.

[snip]

What happened was this: At about 9:00 am, my husband, who happened to be home yesterday, was sitting in the living room with our two dogs when he heard a couple of cars pull up outside. He looked out the window and saw three black SUVs in front of our house; two at the curb in front and one pulled up behind my husband’s Jeep in the driveway, as if to block him from leaving.

Six gentleman in casual clothes emerged from the vehicles and spread out as they walked toward the house, two toward the backyard on one side, two on the other side, two toward the front door.

A million things went through my husband’s head. None of which were right. He walked outside and the men greeted him by flashing badges. He could see they all had guns holstered in their waistbands.

“Are you [name redacted]?” one asked while glancing at a clipboard. He affirmed that was indeed him, and was asked if they could come in. Sure, he said.

They asked if they could search the house, though it turned out to be just a cursory search.

[snip]

Meanwhile, they were peppering my husband with questions. Where is he  from? Where are his parents from? They asked about me, where was I, where do I work, where do my parents live. Do you have any bombs, they asked. Do you own a pressure cooker? My husband said no, but we have a rice cooker. Can you make a bomb with that? My husband said no, my wife uses it to make quinoa. What the hell is quinoa, they asked.

They searched the backyard. They walked around the garage, as much as one could walk around a garage strewn with yardworking equipment and various junk. They went back in the house and asked more questions.

[snip]

They mentioned that they do this about 100 times a week. And that 99 of those visits turn out to be nothing. I don’t know what happens on the other 1% of visits and I’m not sure I want to know what my neighbors are up to.

45 minutes later, they shook my husband’s hand and left.

[snip]

All I know is if I’m going to buy a pressure cooker in the near future, I’m not doing it online.

I’m scared. And not of the right things.

Hey, if Michele Catalano, her husband and son weren’t doing anything wrong, well, then, no harm, no foul, right?

Right?

~~~

h/t Melissa Jeltsen, HuffPo;  *Update* on the men-in-black, see this piece by Philip Bump of the Atlantic Wire (tip to Sullivan’s Daily Dish on Bump bit)





Can you hear me calling you?

11 06 2013

Howza ’bout a quickie?

Personal experiences, privacy, disclosure, spying, blah blah: When I was in college I worked for The Daily Cardinal, the radical campus newspaper.

The editorial editor was always a Marxist (almost always of the Trotskyite persuasion, although the brilliant and scary Karen once referred to her “Stalinist friends”), and the former editor (who the staff loved when he was editorial editor and hated as editor-editor) was prosecuted and imprisoned for failing to register for the draft. Oh, and one of the bombers of Sterling Hall (mentioned a few posts back) had worked at the Cardinal before heading underground.

So: It was not inconceivable that mere association with the Cardinal was enough to land someone on a a government list somewhere.

I never worried too much about it, even though I was quite active politically (anti-nukes, anti-apartheid, US-out-of-Central-America, etc.): I just didn’t rate. I joked that if the FBI did have a file on me, then they were wasting their damn time.

This, then, is the flipside to my flipping out about privacy: I don’t rate, so if the NSA is scooping up information on me, they’re wasting their damn time.

I’m all over the place on this NSA thing. I hated and hate the PATRIOT Act, and think any scandal over snooping is due to the fact that it’s policy, that it’s been stamped RIGHT ON! by Congress and the courts. I get why journalists and pundits (and I) are banging on about this—journalists and pundits (and I) like disclosure of governmental activity—but I’m more flabbergasted by the flabbergast of those journalists and pundits than I am by this particular bit of governmental activity.

I mean, what the hell did these people think we were getting with the PATRIOT Act and FISA and deferential courts?

And there ain’t no surprise about Obama, either: He made clear when he was running the first time that he was going to hit the national security thing hard, differentiating himself from Bush in seeking to legalize data seeking.

Any scandal is that this is all SOP, and insofar as the majority of those polled seem just fine with it all, t’ain’t no scandal at all.

I may be in the minority on this—I hate the info dragnet—but I also understand the general shrug on this: most folks just don’t see or feel any effects from this. And hell, back in the day when I might have had some, small, reason to think there might be eyes on the crowd I ran with, even then I noticed no effects.

Damn, this is getting too long: lemme truncate it. One,  I’ve long assumed any electronic transaction was not confined to private wires, so the latest bit is less revelation than confirmation. Two, in sucking up every last bit of info about every last person, I find a kind of safety in numbers—I and tens of millions of my fellow Americans (and hundreds of millions of my fellow Earthlings) don’t rate. Three (and this requires an argument I’m not going to give, because already tl;dr), I’m more worried about corporate than govt info-hauls precisely because I think corporations are more likely to use the info than is the govt.

Finally, what matters more than the info-haul is the mindset behind the info-haul but I am not going to get into it tonight because this post is not the 3-or-4 grafs I was thinking it was going to be and it’s time to go to bed.

So, whomsoever may be reading this (wink, wink): nighty-night!