If you have been following the discussion of uBiome on Twitter, you may have noticed that others have weighed in and the conversation has exponentially unfolded. There are some great posts from scientist bloggers pondering ethics, including “citizen-journalist” Comradde Physioprof (here and here), Drugmonkey (here), Janet Stemwedel (here), and evidence-minded physician Peter Lipson (here).
Over the last twelve hours, the folks from uBiome have been commenting on what I can now confirm is a lack of IRB oversight. On my own blog, company founder Jessica writes the following, which I have annotated with numbers so that I can organize my subsequent comments:
These are very important issues and I’m glad that you’ve raised them in such a thoughtful way on your blog. Our response is not “how dare you criticize us” — not at all. We are glad to have these issues brought to public awareness and believe as strongly as you do in ethical safeguards for research. (Comparing us to Nazis, though, is not a great way to start a dialog — just sayin’. [1])
Our point in requesting that you talk with us first was not to oppose transparency, but just to get the facts straight. Your previous post called our actions “ethical shenanigans” without verifying any of your assumptions about our project. We agree with transparency, but also appreciate having a chance to get the facts right before publication [2].
That said, we’re happy to respond here (and elsewhere) and to address your concerns and those of the rest of the public. We want citizen science to become a viable new way to fund and perform research, and unverified rumors of ethical issues will tarnish that ability unjustly.
Also — please remember that we’re a small team trying to do a big thing [3]. Attacking us publicly before giving us an opportunity to respond and set the facts straight is really hard on us [4]. We don’t have a huge PR staff (well, any PR staff at all), or even a lot of time to keep up on Twitter [5]. We’re not some huge monolith of moneymaking. We’re three people who want to empower people to get involved in science, and to ensure that this field can grow in an sustainable, inclusive, and ethical manner.
We can now safely say based on statements left here and at Comradde Physioprof’s blog that uBiome has not received IRB approval for their project, despite having made what I believe to be grossly over-stated claims about the applicability of their data to human disease and the fact that they have already collected money from their subjects and are in possession of potentially identifying data from their future subjects. That makes this “ethical shenanigans.” I believe that this is made more egregious by the fact that they used their university affiliations to “sell” their donors/subjects on the fact that they could complete their study as they described. Indeed, on their newly updated FAQs they state [with my comments in the text]:
However, IRB approval is not required for us to provide our primary service of microbiome compositional analysis and interpretation for private parties [Yup, that's true - MLB]. Thus, our sample collection is part of a service and our research study is a meta-analysis of de-identified data, which is technically exempt from IRB [This is not true when you are the people who collected the data to begin with. It is only true when you receive de-identified data from another investigator who already went through the IRB process - MLB]. That said, we are doing full Board review to insure that every aspect of the project is ethically safe and sound [That's good. - MLB].
If uBiome accepted any federal funding or was a university research laboratory instead of a citizen science startup, the IRB review would indeed be mandatory [This is where I disagree most vehemently. This is not a citizen start up. It is a start up founded by people affiliated with a university whose status as a start up allows them to skate the rules. This is my greatest concern, as stated in my original post - that university and industry affiliates will brand themselves "citizen scientists" to skate ethical obligations when they should know better. - MLB] As it is, this review should only strengthen uBiome as a research study and as a community [Yeah, maybe. - MLB].
This may all be a moot point, given that the dollars are already out of the wallets, but I still want to return to Jessica’s original comment, which believe warrants addressing.
[1] I want to be clear that I in no way compared uBiome to a bunch of Nazis. Indeed, Jessica’s tactic over the last 12 hours has been to paint the scientists who have questioned uBiome’s ethics as a bunch of big ole meanie pants-es who don’t understand that they just LOVE SCIENCE!!! I can imagine that criticism of the project must have been difficult for a group that was receiving essentially unquestioning praise from the popular media, but them’s the breaks. If Jessica intends to take the Fox News approach and claim that I called her a Nazi, so be it. I know that readers of the original post will remember that I simply offered the context for why we have IRBs. We have IRBs specifically because of Nazi physician experiments and the Tuskegee syphilis incident. I didn’t make up history. There’s a reason we have IRBs and it has nothing to do with whether we are “good people.” It’s because we are a better community when we all agree to abide by particular ethical standards. Calling your critics “combative” is a distraction from the discussion at best and disingenuous at worst.
[2] I am glad that uBiome is now seeking IRB oversight, but the study is still problematic in that they took money and information before-hand and have engaged in what I believe to be coercive advertising. I’ll leave it to their IRB to deal with that and only hope they seek the guidance of a real IRB and not a commercial rubberstamper. I hope that this is a lesson for real citizen scientists in the future. Your career scientist colleagues take ethics seriously as a community. But, I believe that many of us would be willing to help if you asked…
[3], [4], [5] Your obligation to do the right thing is the same whether you are one person or one hundred people. This isn’t the PR problem that Jessica paints it as. Ethics are not a mater of public relations. What I think this is, is an example of is a situation where having a mentor with experience in this sort of thing would have prevented this. it is irrelevant whether your ethical obligation is hard on you or makes you feel bad. It’s a shame that receiving well-intentioned criticism makes anyone feel bad, but that is the nature of science. We believe that review and criticism from our peers ultimately makes us better. Sometimes that criticism stings, but I believe that open funding and open science warrants what Drugmonkey genius-ly termed “open peer review.” I refuse to engage in this privately by email when it is a public project, especially given their propensity for threatening legal action when these communications are discussed openly.
And now, if you’ll allow me a Nazi reference, which I assure you is not akin to calling Jessica a Nazi…
I bet that the Nazi scientists who committed atrocities felt bad that their peers pointed out they had been unethical. They may even have believe they were doing “good work” or “important work.” But, you know who I bet felt a lot worse? Their victims.
Reasonable and responsible ethical oversight is not about us as scientists. It’s about protecting the safety and well-being of our subjects in a transparent way. If “citizen scientists” cannot realize this, then that should serve as an enormous red flag.
(Source)
Advertising I consider more coercive than ubiome:
*The commercial website that comes up for Linzess (a drug for Irritable Bowel Syndrome that is nonetheless the first sponsored google hit I got on a search for Inflammatory Bowel Disease; for the laymen, please note these are vaguely similar sounding acronyms that represent very different diseases)
*The Depends website, that comes up in the sponsored google links as well. They offer free samples, which we all know from the infant formula debates is the most coercive of all possible advertising.
*The DrDahlman online diet for irritable bowel syndrome.
*The Myinflammatoryboweldisease dot com site. *shudder*
None of which excuses ubiome if they are misleading people. And of course I can recognize that since I *would* be hyperinformed on this issue, I’m not actually the best person to tell if their advertising is misleading to the general population of people checking out their website.
However, I suspect that those outside of microbiology might very well be sensing the “trendiness” of microbiome sequencing, and have an instinctive distrust for it as “overpromising” (similar to how non-cancer biologists aren’t all revved up about cancer genome projects, or how non-neuroscientists like myself feel about the to-do over brain mapping). Microbiome research is probably oversold in some contexts. That said, in actually wanting to manage my own health and for the bulk of things my friends and family ask me about, I find myself wishing I had data on the microbial populations all the time. Shit (literal and figurative) matters, and physicians don’t have answers (and sometimes don’t seem to care about) the microbial ecosystem level explanation of “why” something happens. And, in fairness to physicians, when the the answer to “how do you treat” is always “throw antibiotics at it until something sticks, and who cares how it impacts the GI tract”, because of the constraints of our healthcare system, I don’t know that I blame them much.
Some good points are being made here and I want to divide them into sections for easier reading of your readers.
IRB plans
Your post has not changed our plans at all. We did not apply for an IRB before fundraising simply because we had no idea our campaign would be so successful and we did not have any funding to go through that process. We consulted with our advisors inside and outside of UCSF and they assured us that this would be acceptable, and so we went forward with the crowdfunding with the idea that we would then do the IRB when we actually needed individual consent for sample collection.
Many of the rules you and others have cited do not cover the type of research we are planning to do. In fact, we were informed that if we chose, this could be an exempt (i.e., non-human subjects) study because we would only be dealing with de-identified data at that point. Because we would prefer to be able to continue the study and later contact participants, we are seeking human subjects approval.
Nazis and power differentials
As for the Nazi comment: Yes, as a matter of historical fact, Nazi experiments and the Tuskegee experiment gave rise to IRBs and thus to questions about our project. However, using them as a way of framing our project is alarmist and unnecessary.
Participants in our study are entirely willing contributors to our project, empowered with full rights in the society in which we live (unlike Jews under the Nazis or African-Americans in the American South at that time), and capable of opting in or out of our project as they choose. These were not options available to Jews under the Nazi regime (who were forcibly blocked from leaving) or to the subjects of the Tuskegee experiment who were LIED to about the medical treatment they received.
Further, our study is non-invasive, not physically harmful, and does not put our subjects (when we have them) at any sort of risk including the psychological risks you mentioned, such as learning of an STD. (Our study is about microbial diversity; it does not differentiate between strains and thus will not tell participants about STDs.) So there is literally zero chance that our research, which is non-invasive and bears no risk of harm, could damage our participants in the ways you imply.
To compare this to Nazi experiments, which implies a huge power imbalance between us and our participants, and harmful and invasive testing, which we are not doing is disingenuous and unhelpful to the more important larger debate about how to ensure ethics in citizen science.
Name-calling
You are entitled to hold your opinion of us as silly enthusiastic teenagers with no idea of what “OMG, like totally” ethics are, but that is clearly false.
Your post was not our first inkling of ethical standards — all members of our team are university graduates (and two PhDs) who have written at least six theses among us (some of which involved human subjects). Your characterization of us as silly hipster teenagers running off half-cocked is insulting and incorrect.
Your statement that we have made “grossly over-stated claims about the applicability of their data to human disease and the fact that they have already collected money from their subjects and are in possession of potentially identifying data from their future subjects” is dangerous, insulting, and damaging to our reputations without any basis in fact. It is shameful as a blogger, scientist, and thinker to cast aspersions in this way without verifying them.
Saying that we are not “real” citizen scientists is another comment of this ilk which I think is out of place in a conversation among adults.
This is not me whining, like a child, “OMG, you’re a big fat meaniieee!” Instead, I am saying that your remarks are irresponsible and unkind, and not conducive to productive public debate over important issues.
Summary
Citizen science raises many questions — one of which is how small teams can make sure that their research is conducted ethically. This is a great question, and one that should be explored in a spirit of inquiry, debate, and collaboration.
the subjects of the Tuskegee experiment who were LIED to about the medical treatment they received.
Further, our study is non-invasive, not physically harmful, and does not put our subjects (when we have them) at any sort of risk including the psychological risks you mentioned, such as learning of an STD. (Our study is about microbial diversity; it does not differentiate between strains and thus will not tell participants about STDs.) So there is literally zero chance that our research, which is non-invasive and bears no risk of harm, could damage our participants in the ways you imply.
Do you see why you shouldn’t be making this call for yourself? No?
This is not me whining, like a child, “OMG, you’re a big fat meaniieee!” Instead, I am saying that your remarks are irresponsible and unkind, and not conducive to productive public debate over important issues.
A distinction without a difference.
is dangerous, insulting, and damaging to our reputations without any basis in fact.
I don’t think you know what “public debate over important issues” means.
sciliz-
research benefits are “oversold” in every damn context there is or will ever be. ever. so correspondingly any scientist touting potential outcomes for their investigation is at some level “lying” (as per Jessica’s characterization) to their research subjects. IRBs provide some minimal check on the degree to which people are being lied to. even that, however, is no guarantee that the subjects will understand all of the implications. but this doesn’t mean we don’t have a responsibility for due diligence.
This is making me head hurt, but I’ll bite and reply…
1) IRB plans: I would maybe have agreed with you if you hadn’t coupled your requests for donation with the selling of kits for participation in your research. As it is, you’ve enrolled your subjects who now have an expectation for participation without knowledge that there would be any consent process before they sent you money. I’d question the advice you were given on de-identified data because you are the holders of their identifiers. But, what does it matter? As I said, the dollars are out of the wallets. Go forward and get your IRB approval. Forward, I say. I will continue to disagree with what you posted to your fundraising site to get the money and whether you should have formally engaged the IRB beforehand, but I’m one scientist on the internet, right?
2) The Nazis: The Nazi experiments and Tuskegee Incident (which you don’t seem to object to as a reference) are the historical context for why we have IRBs. It doesn’t matter whether you think it’s relevant to what you do. The point is, we have agreed as a scientific community that we are not well-able to judge the ethical implications of our own actions. It doesn’t matter if you’ree drilling holes in people or just scrapping dead skin cells from their arm. That’s why we have outside ethical oversight. I bet these guys thought they were on the ethical up and up and, like you, they’re not Nazis.
3) Name calling: I never called you a name. I never called you a silly teenager. I did say that I disagree with your conduct and the manner in which you collected your funds. My “kindness” is irrelevant. We, as a scientific community, should be concerned. You are not, what I believe to be, a “real” citizen scientist. You are a graduate student in collaboration with professional PhD scientists with a start up company. You are not anymore a “citizen scientist” than the CEO of Pfizer is.
You can continue to paint this as me “calling you names” and being “unfair” all you want, but it’s simply not true. As a scientist, I am critical of your work because I believe it to warrant question.
drugmonkey- I don’t know. Weirdly, the biomedical research studies I’ve participated in as a subject all undersold the personal benefits. A lot of the psychological/social experiments I’ve participated in as a subject were pretty hilarious in overstating their benefits though.
(NB: for reference- one of the most enjoyable studies I ever did was the one where they injected me with LPS- those folks were super nice and I was excessively hyperinformed because it’s basically the same as my thesis work. One of the worst studies I ever did was one with my kid where they bribed him into eating vegetables using Diego stickers. The trouble was that as soon as the incentives went away, so did the vegetable eating. Hardest thing to correct for, given my parenting style)
One of the ways I think Melissa’s critiques of ubiome are well-founded is that the “possible personal benefits” do strike me as in the top ~25% of “overpromising” for biomedical studies. Again, not even close to overpromising relative to psychological/social research norms, and not even remotely close to all the crazy commercial junk available on the internet, but I think we all have a vested interest in being more ethical than IBD snakeoil salesmen.
(this all is independent from the “potential benefits to humankind” aspect of consent I’m personally familiar with, of which virtually all overhyped massively, but short of comparative effectiveness metaresearch, I don’t see a good way around that).
As drugmonkey notes, Jessica’s claims that there is absolutely no risk to their study is exactly the purpose of an IRB. It is not the role of a few scientists to be the final word on this question. It is the job of an IRB to examine historical examples and decide if this is true. The fact that they have clear issues with recruitment tells me they would have benefited from contacting an IRB earlier.
As for the Nazi and Tuskegee comparisons, I think Jessica indirectly brings up an important point. When we learn about scientific ethics, they focus on the big cases that moved the world into action. These are also the cases that are so extreme that no sane scientist today would think of doing anything like them. They’re vital in the teaching of scientific ethics history, but lousy for teaching practical ethics. We need more cases of serious scientists using their common sense ethics and making ethics decisions that were bad in hindsight. These cases are buried in good ethics courses, but are rarely part of public discussions like this.
The first example that comes to mind was detailed in “The Immortal Life of Henrietta Lacks” There are the obvious issues of consenting the use of biological tissue removed during clinical procedures for research and corporate profits. The more direct comparison for this situation was when scientists later tried to get blood samples from Henrietta’s family. A scientist with poor english skills and no familiarity with the culture was sent to consent and collect blood from a poor black family in urban Baltimore who barely had elementary educations. Despite a no-harm study that was little more than collecting blood samples, he accidentally left them so full of misinformation that it significantly affected years of their lives. This case is probably still too extreme compared to what uBiome is now doing, but it shows that defining “no harm” isn’t always obvious.
I realize I’m a bit late jumping into the conversation here. I can speak for a few “citizen microbiology” projects that I’ve helped coordinate – e.g. Belly Button Biodiversity, Wild Life of Our Homes, Armpit-pa-looza, etc (see project pages on our website: http://yourwildlife.org).
While yes, these projects are pitched in a “Yay science! Help us explore and discover more about the species hidden in our midst!”-kind-of-way, we take ethics and the rights of our citizen scientists incredibly seriously. We have sought and received IRB approval for all of these projects (before they were ever brought online), and regularly check-in with our IRB coordinators as the projects and data analysis evolve. All of our participants sign an IRB-approved consent form. We’ve engaged in conversations about ethics/citizen scientists rights with our peers doing similar work (see MicroBEnet http://www.microbe.net/; Conference on Public Participation in Scientific Research http://www.citizenscience.org/community/conference2012/post-conference/; Scio13 session on citsci ethics http://scio13.wikispaces.com/Session+6B). And while we don’t yet have all the answers about where the results and outcomes of citizen microbiome research will lead us in the future (in terms of the science, in terms of the ethics), it is critical for those coordinating and designing these projects to be constantly be thinking and talking about it. A small staff is not a good excuse. I’d encourage the uBiome folks to seek guidance and counsel from those participating in this discussion (myself included).
It concerns me greatly that others doing similar research to ours with the help of citizen scientists haven’t invested the same amount of time, effort and forethought as we have to protecting the rights of our participants. It makes us all look bad, and more importantly, shows a lack of respect for our citizen participants.
If I take one thing away from this ongoing #citsci ethics dialogue on Twitter and the blogs, it’s that I will go the extra mile now to clearly and deliberately articulate how we are safeguarding the rights and privacy of our participants. We’ve done that on internal documents, in communications directly with our participants, and to our IRB, but I see now how important it is that we make that information publicly available so that others considering similar types of work can seek guidance and learn by example.
Actually, I can see potential psychological and economic harm. Health care workers are exposed to and likely carry multiply resistant organisms on their skin or in GI tract. If they use good infection control practices and are not infecting their patients, it is not of particular relevance. But workers (day care, too) have been prohibited from work for being colonized with Salmonella, for example, or MRSA. Knowledge of types of organisms carried might, in fact, induce stress or anxiety, or guilt, or fear…and if data were not properly de-identified, could have economic repercussions. I’ve seen incredible anxiety in my patients who carry MRSA or another bacteria, terrified that they have or will harm family members, for example.
BSci said:
As for the Nazi and Tuskegee comparisons, I think Jessica indirectly brings up an important point. When we learn about scientific ethics, they focus on the big cases that moved the world into action. These are also the cases that are so extreme that no sane scientist today would think of doing anything like them.
Unfortunately, this is not true. The National Cancer Institute and the Gates Foundation both funded cervical cancer studies in India which merely monitored women in control groups as their cancer progressed through death. So far, we know at least 79 women died from lack of treatment:
http://www.azcentral.com/news/articles/20130213ethics-cancer-studies-india-questioned.html
Note, too, that the program director for NCI said that it wasn’t “sufficient” to just make sure that their simple cervical cancer test worked, they also needed to continue until they could prove a statistically significant difference in mortality between the screened group and the control group.
In other words, death was used as a yardstick.
One of the main reasons IRBs exist – even imperfectly, as surely shown by this cervical cancer case – is because scientists are too close to their research. They, of course, see the good, and ignore or refuse to see or perhaps genuinely don’t see the bad, the negative, the possibilities for harm. It’s difficult to be objective about any project you’re close to, regardless of if you’re a scientist or an artist or anyone else, really. But in the case of science and research, this difficulty in objectivity is why we have IRBs when it comes to human subjects research: because we know that human nature is such that even the best and most honest person can lose objectivity, and because it is our responsibility, as ethical and moral agents, to make sure that any people involved in human research are protected to the full extend available.
While I’m not disputing that there could be economic or psychological harm from knowing one’s microbiome (until Obamacare at least, there was nothing practical to prohibit an insurance company from refusing to insure someone with Crohn’s disease; I could imagine a “pre-existing microbes” clause pretty easily), the specific example of MRSA is implausible. Pretty much everyone is colonized with Staphylococcus, and the majority of us probably have Staphylococcus aureus. It is non-trivial to differentiate Staphylococcus aureus from methicillin-resistant Staphylococcus aureus in the context of an all-microbe screen. That level of discrimination is likely not technically feasible in a microbome test at this point. It wouldn’t be hard to run another test to see if MRSA is there, but this suggests the ethical issue is ensuring the samples are locked up and destroyed after the specified tests are conducted.
Ok. So perhaps MRSA was a better example before it became ubiquitous, but I have had the most experience with patients and families traumatized by this knowledge. Colonization with MRSA is still grounds for stringent isolation in many hospitals, which is burdensome for both the patient and the healthcare team. It was also grounds for reassignment in the hospital duties when it was still novel. Ditto with Salmonella, despite no transmission to patients. In fact, I used to find it disturbingly ironic that you could lose your job for being a carrier of Salmonella, but not hepatitis or HIV.
Fast forward now to VRE (though that is now old-hat, too), Carbapenem-resistant Klebsiella or Acinetobacter. Or perhaps you’ve traveled to India and unknowingly been colonized with an NDM-resistance producing organism. Part of you might want to know, and it might be relevant for infection-control or epidemiology purposes, but I suspect most folks would find it quite disturbing. It will also lead to draconian (albeit necessary) isolation if you are a patient. So now, sometimes I think such knowledge is best left on a “need to know” basis.
Ok, so I’m not communicating well *why* Crohn’s disease would come up in ubiome and antibiotic resistant microbes wouldn’t. Crohn’s disease is, as best as we understand it, a disease of the microbial *ecosystem* in the gut and a disease of the immunological programming that occurs with that ecosystem disruption (I’m not sure which is chicken and which is egg here, but for some conditions, including, weirdly, obesity, there’s some evidence that you can at least fix the disorder by fixing the microbial ecosystem). Antibiotic resistant microbes of otherwise commensal strains of microbes are often (as in the case of MRSA, as I know from personal experience), obnoxiously difficult to distinguish from the susceptible strains.
Ubiome, as I understand it, is sequencing the bacterial ecosystems (probably via 16s ribosomal DNA; at least this is what the NIH funded human microbiome project started with). To explain how 16s ribosomal DNA sequencing works, I would have to go into a lot of detail and would probably leave gross Carl Woese fangirl splooge all over the page. Suffice it to say, 1) it’ll sequence everything that is sequence available (i.e. not in tiny numbers/degraded/ect.) with a ribosome (bacteria, archaea, eukaryotes are possible, but I strongly suspect that the vast majority of identifiable stuff in people is bacterial. NO viruses, since they obviously lack ribosomes) 2) it is NOT an appropriate measure for telling if antibiotic resistant strains are present. It’s better for genus level than species level- early applications of 16s ribosomal DNA weren’t even that amazing at telling E. coli from Salmonella, if I recall correctly. It is certainly poor for most strain level distinctions, which what we’re talking about for antibiotic resistance. In many cases, antibiotic resistance genes aren’t even on the core genome for the bacteria. They like to be on plasmids, for instance (which can help them spread so infernally fast). So they will never impact something like the 16 s ribosomal DNA sequence.
TLDR: for strain level differences, like antibiotic resistance, a microbiome project using 16 s ribosomal DNA cannot pick it up. Microbiome projects, as I understand them, DO NOT sequence EVERY gene of EVERY microbe. Not technologically feasible (yet, anyway).
As an aside- I’m pretty sure the ethical decision is above my pay grade, but I’m troubled by a doctor saying the patient might not “need to know” if they have a microbe that would lead to “draconian (albeit necessary) isolation”. Mind you, there’s no easy answer on that one.
Interesting though how we don’t seem to be able to agree on exactly what is being measured….
Thanks for helping me understand. I also need to clarify–did not mean that in certain settings, e.g., in hospital, the patient doesn’t need to know. It will affect a patient’s care and is important for infection control, although isolation for having a resistant bug also has significant downsides. I was saying someone in general public might find this unnecessarily troublesome. Hope that is clearer. If not, try me again.
Becca, this is one of my issues with the human gut microbiome work and especially it being performed in a crowd-sourced manner:
“but for some conditions, including, weirdly, obesity, there’s some evidence that you can at least fix the disorder by fixing the microbial ecosystem”
There is evidence in terms of correlation, correct? I am not convinced that we know enough about the development of a functioning happy gut community to begin to mess with it in order to obtain a health outcome — we know next to nothing in the experimental sense of what microbes interact happily or antagonistically with what other microbes. Will people begin messing with their microbiota (they already do!) without the advice of a doc? Does UBiome recognize that this is a potential outcome of their work? Are they advising people not to mess with their flora? I suppose an analogy could be the 23 and Me work — I wonder what they do (goes off to Google).
cackleofradness-
First, it’s not just correlation data supporting the idea. For example, the obesity thing has been experimentally demonstrated in mouse models. You can make a skinny mouse fat by doing a microbiota transplant from a high-fat fed mouse. For humans, one of the most promising (albeit “icky”) treatments for chronic C. diff infections are fecal transplants from healthy patients. There’s also this nice piece Ed Yong did on the recent work on the weird kwashiorkor form of malnutrion, which talks about human to mouse microbiota transfers demonstrating causal links of the microbiota on disease state http://phenomena.nationalgeographic.com/2013/01/30/gut-microbes-kwashiorkor-malnutrition/
Second, anytime you give someone antibiotics, you are basically wiping the gut microbiota slate clean. A better question is- when will docs stop messing with people’s microbiota without the advice of a microbiologist?
And third, this one is kind of hard for me, but doctors really do need to pay attention to this. Among the many Issues with the hospital stay that went so awry at the end of my Dad’s life was that they put him on antibiotics- but for some reason couldn’t get him a yogurt with live cultures (it wasn’t that there was any medical reason this wasn’t recommended, and he did eventually get one, but it really should be a no brainer). Of all his medical issues at that stage, an upset tummy was not high on the doctor’s lists of concerns. But it was a pretty big part my Dad’s ideas about quality of life. And it might have been the reason he didn’t go to the hospital when his lungs were filling up with water. Look, it’s not like good microbes would have saved his life. He was very ill by that point. But for want of a yogurt, I might have lost the chance to say goodbye in person. Shit matters. To patients, and their families. Doctors need to realize this.
Melissa- well, I’m certainly persuaded by the conversation here that the website could lead reasonable people astray. I’m quite taken aback scientists didn’t realize 16s ribiosomal DNA sequencing is crucial for nearly all microbial phylogeny, and that microbiome != all genes of all microbes in a person. But then, I suppose we can’t all be microbiologists. Pity.
Becca, I don’t study bacteria or really anything with fewer than several million cells. I also do very little genetic work, so I wouldn’t expect to be any more of an expert than the typical reasonably well-educated lay person.
B, it will make you happy to hear that my general phys is very concerned about gut microbes and is slow to prescribe antibiotics for this very reason. I have read the studies you cite above (not the baby story, but I did hear about it on npr). My concern is still applicable — yes we have manipulative results from mouse models and a low sample size of studies (I think it was 42) showing the efficacy of fecal transplant — but we know very little about the community dynamics of human guts broadly, over time and following experimental manipulation. Last I looked at this literature, the experimental, longitudinal work in humans is behind the mouse model work. Thus, my question is — are the UBiome people going to think about/counsel/consider how the results they may provide could influence people to manipulate their gut flora? Eating yogurt is one thing — I worry people are going to demand antibiotics to ‘wipe’ their systems and build back up with supplements or something — and that what if this becomes common practice? I used to work at a food coop and a woman asked me one time if I recommended the aloe enema after or before the coffee enema to clean out her toxins? Um.
My point was, yes, people will use ubiome to try to manipulate their microbiotas. But people are already trying to do this, and they’re doing so without any data on it. Often under a doctor’s orders.
The truth is, it’s already an area with a lot of relatively desperate consumers, at least for GI disturbances. That one is also a weird area for the FDA to regulate. For example, I learned in the food sci department that people can offer probiotics for “maintaining regularity” but not “treating constipation” for example; the former skirts the diagnosing/treating/curing disease criteria.
The way I see it, given how our society at large treats things like enemas, there has to be a pretty intense motivation for someone to try that. Ubiome is a step toward more knowledge. And yeah, pretty much all knowledge is hazardous in some context. I still think that, as is, some people having the option to get this info from ubiome is an improvement over the status quo. Is it worth making sure there is oversight, particularly if we all have a collective interest in making sure the public sees researchers as MUCH more ethical than snake oil enema salesmen? Absolutely. But if an IRB looked at the project and approved as-is would I see a problem? Not necessarily.
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I’m 36 weeks and i was tested for this already and it did come back good. I’ve in no
way read of it right before eiether, and in the event the health care provider told me I was rather concerned.
He discussed it to me once i questioned, but I however was not thoroughly knowledgeable.
Thanks for your personal facts, because this tends to make
me come to feel a lot more comfortable and confident
my medical practitioners are on the right track with supplying me an IV
with pendacilin as soon as I’m in active labor!!!
I’ve gotten strep throat like 13 times because I was in 6th grade. I’m 24 now.
So that is about once a yr since 6th grade. I’ve had it twice in the past 3 months. (sure we’re discussing receiving my tonsils taken out) I know
how a lot you suffer with this and i know the things that can happen if it goes untreated.
These things may possibly not constantly happen, but still the soreness that strep causes
is value using antibotics to get dealt with.
Also, having antibiotics allows you to try and do the ideal factor and not be contagious, just
for the reason that you could possibly not get RF doesn’t necessarily mean the person that you give strep to won’t.
The real problem is that people aren’t taking their drugs correctly, finishing the products. THAT IS THE REAL ISSUE.
Quite a few excellent details throughout. I do should current an
opposing view regarding the cut-and-dry distinction between traditional and electronic agencies.
Self-assured, some traditional agencies have made digital
a “thing we do.” But a great deal of others recognized the
birth of electronic internet promoting years back and integrated it
into their enterprise model. Now, our “print group”
learns digital trends and we have now our digital authorities functioning in concert with them.
I’ll go so much as to say it can be become irresponsible to believe of advertising and promoting as either traditional or electronic. These days, we glance while in the total photo -how we can integrate all suitable solutions of communicating a message. It is no different than what we have finished since the beginning.
Now times, even the slowest substantial speed connections can
assist a decent good quality movie stream. The keyboard continues to be wonderful as well as the create high-quality
impeccable. Now absolutely everyone has heard that prior to many periods at their Martial Arts university, but until finally you have got really finished it in a authentic combat,
you do not actually believe it.
I’m curious to find out what blog system you are working with? I’m having some small security issues with my latest blog and I would like to
find something more secure. Do you have any solutions?
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