Resources from yesterday's forum "Do You Know Where Your DNA Is?"

CityClub panelists Kelly Edwards, Donna Russell and Shannon Sewards. More info on them here.

Yesterday's panel on biobanks and storing genetic information was absolutely fascinating! Our panel was incredibly engaging and informative. As with most people involved with CityClub, I may have my own areas of more interest (although I love all of our forums, of course)! In addition, there were great connections made by our panel between our specific event topic and to our Community Matters Campaign theme of public trust.

Unfortunately, "Do You Know Where Your DNA Is?" was not captured by television cameras, and thus will not be re-broadcast. However, we still have things to share from the event! There is, of course, our Twitter stream from the event: click here or, if that doesn't provide results, click the "read more" button at the end of this post.

Our panelists shared several very timely resources:

• The October 4, 2010 issue of Time included a cover story: How the First Nine Months Shape the Rest of Your Life.
• Newsweek from October 24, 2010: The Prematurity Puzzle - Research on early births could hold clues to disorders like autism and cerebral palsy.
• One of our panelists also quoted this Wired magazine article from June 2010 that referred to biobanks as "libraries of flesh".
• Update! One more article from MSNBC - hat tip to @UWMedicineNews - "Who owns your genes? In many cases, not you: Many companies hold patents on patient's genes, affecting testing, cancer research "
• One more: Genetics & Public Policy Center.
• And yet another! Hooray! Northwest Association for Biomedical Research blogger Brian Glanz published some very detailed reporting from the event! Click here to see all the posts. Thanks, Brian and NWABR.

Another fascinating resource is a recently published book titled The Immortal Life of Henrietta Lacks, by Rebecca Skloot - the book tackles some of the ethical issues involved. Here's a little preview:

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits.

Seattle Public Library has this book in "regular" as well as large print, audiobook on CD and audio e-book - click here to find it. (Full disclosure: When I looked the book up at the library, I put it on hold for myself before I published this post! But, I promise to read and return it in a timely fashion.)

We experimented with a new, as yet untested method of recording audio of the conversation - should it prove successful, we will add it to this post! (Update: audio is now live on our past events page!)

Have more resources? Let us know in the comments! Again, the full Twitter feed from the event is after the cut - click the read more button to see it.

Below you'll find our Twitter feed from the event - and don't forget, the earliest tweets are at the bottom, with the most recent on top!

CityClubLive: And we're done! thanks all!
Oct 25, 2010 08:30 PM GMT  

CityClubLive: Contact your local representatives if you have concerns #healthcare
Oct 25, 2010 08:29 PM GMT  

CityClubLive: Resources: Time article, new Newsweek, book release (will follow up with specifics) #healthcare
Oct 25, 2010 08:29 PM GMT  

CityClubLive: How can we get engaged? Continue the conversation (Edwards) #healthcare it's not straightforward so we need more talking
Oct 25, 2010 08:28 PM GMT  

CityClubLive: Russell: "I think it's worth it in the long run." #healthcare
Oct 25, 2010 08:27 PM GMT  

CityClubLive: Participants may be enthusiastic but "I see it as our responsibility" to protect them and to care for this valuable info #healthcare
Oct 25, 2010 08:26 PM GMT  

CityClubLive: "It's a delicate balance" (Sewards) - need to be very careful to respect patients #healthcare
Oct 25, 2010 08:26 PM GMT  

CityClubLive: Edwards- 68% would still participate in a study even with privacy concerns- many people want banks to share MORE data #healthcare
Oct 25, 2010 08:25 PM GMT  

CityClubLive: Is all this focus on consent/privacy/ethics holding back the process? (audience question) #healthcare
Oct 25, 2010 08:24 PM GMT  

CityClubLive: Audience question - what ARE the concerns about what can happen with this data? #healthcare
Oct 25, 2010 08:21 PM GMT  

CityClubLive: Sewards - encouraging people who have questions about research to call IRBs. http://www.washington.edu/research/hsd/ #healthcare
Oct 25, 2010 08:21 PM GMT  

CityClubLive: "I think we absolutely owe people results back" - but what "results" means has been different to the public and to researchers #healthcare
Oct 25, 2010 08:18 PM GMT  

CityClubLive: "We know it's going to take communication, accountability, transparency" to build/sustain public trust #healthcare (Edwards)
Oct 25, 2010 08:18 PM GMT  

CityClubLive: Also: ethical obligations of results disclosure #healthcare
Oct 25, 2010 08:16 PM GMT  

CityClubLive: What steps would you recommend to build public trust regarding biobanks? (Audience question) #healthcare
Oct 25, 2010 08:15 PM GMT   

CityClubLive: Panel question to the audience of how many would be comfortable just giving a sample with no follow up info- "drop it and go" #healthcare
Oct 25, 2010 08:14 PM GMT  

CityClubLive: Edwards: "We should shift to consenting to a process." I'm agreeing to a process, if things change you should contact me, etc #healthcare
Oct 25, 2010 08:13 PM GMT  

CityClubLive: Edwards - we don't KNOW the risks & benefits of genetic samples/research, so it's hard to consent to them #healthcare
Oct 25, 2010 08:13 PM GMT  

CityClubLive: "I think we've outrun the term informed consent." (Edwards)
Oct 25, 2010 08:12 PM GMT  

CityClubLive: Audience question - because things are changing so fast, can anybody ever really give full consent? #healthcare
Oct 25, 2010 08:12 PM GMT  

CityClubLive: Discussing a computer-based interactive interface for consent (Edwards) #healthcare

Oct 25, 2010 08:10 PM GMT
CityClubLive: Sewards- "we think of consent as an on-going process"- make sure participants have an on-going understanding, keep forms updated #healthcare
Oct 25, 2010 08:10 PM GMT  

CityClubLive: Audience question - the "white coat problem" - people forget what was said, want to please docters, etc - what about videos?
Oct 25, 2010 08:09 PM GMT  

CityClubLive: Sewards talking a bit more about the IRBs- wide variety of people sit on these boards- UW, students, lawyers, general public etc #healthcare
Oct 25, 2010 08:08 PM GMT  

CityClubLive: (Russell) How can we standardize/harmonize our processes? #healthcare
Oct 25, 2010 08:06 PM GMT  

CityClubLive: What's the challenge of working on this domestically & internationally at the same time? Russell addressing this #healthcare
Oct 25, 2010 08:05 PM GMT  

CityClubLive: Getting individuals involved in managing their own data online? Everybody sets their own privacy? (Edwards) #healthcare
Oct 25, 2010 08:04 PM GMT  

CityClubLive: Here's another description (less technical) of the Belmont Report: http://www.irb.purdue.edu/belmont.shtml #healthcare
Oct 25, 2010 08:04 PM GMT  

CityClubLive: The governance strategy depends on the purpose of the bank (Edwards) #healthcare
Oct 25, 2010 08:03 PM GMT  

CityClubLive: Seward - outlining how biobanks should be governed #healthcare - how data will be used, who will access it, how will you protect it
Oct 25, 2010 08:02 PM GMT   

CityClubLive: Because of abuse of the process in the past w/regard to specific populations - but we still need to study them, but ethically #healthcare
Oct 25, 2010 08:01 PM GMT  

CityClubLive: The burden of research should not fall on just one population- now so many restrictions are on certain populations that no one studies them
Oct 25, 2010 08:01 PM GMT  

CityClubLive: Sewards mentions the Belmont Report: http://ohsr.od.nih.gov/guidelines/belmont.html #healthcare

Oct 25, 2010 08:00 PM GMT 
CityClubLive: Discussing biobanks & data retrieval from populations in developing nations #healthcare
Oct 25, 2010 07:59 PM GMT  

CityClubLive: Breakdown in communication w/ specific populations after research is complete - they aren't getting the feedback they expect #healthcare
Oct 25, 2010 07:58 PM GMT  

CityClubLive: For example, some of the tribes are keeping control of the data, but sharing w/ the projects they are interested in #healthcare
Oct 25, 2010 07:57 PM GMT  

CityClubLive: Countries that have #healthcare for everybody see more enthusiasm & participation among the population b/c they see how they will benefit
Oct 25, 2010 07:56 PM GMT  

CityClubLive: Edwards - ties it back to our CMC theme of public trust! #healthcare
Oct 25, 2010 07:55 PM GMT  

CityClubLive: Next question: are there historical abuses of the system that have made certain popoulations less likely to participate? #healthcare
Oct 25, 2010 07:54 PM GMT  

CityClubLive: Sewards gets into the details - when do you ask them? What does the consent form look like? Adding context to consent. #healthcare
Oct 25, 2010 07:52 PM GMT  

CityClubLive: (Russell) Talking about how they inform the women at GAPPS what/how they are collecting for biobanks #healthcare
Oct 25, 2010 07:49 PM GMT  

CityClubLive: Advocacy-based biobanks tend to be the latter (Answer from Edwards) #healthcare
Oct 25, 2010 07:49 PM GMT  

CityClubLive: The trends are going in 2 opposite directions- greater anonymity by removing personal IDs, or keeping tighter link w/ person #healthcare
Oct 25, 2010 07:47 PM GMT  

CityClubLive: Edwards - everyone is making their own decisions about these things - how much info to keep, etc. #healthcare
Oct 25, 2010 07:46 PM GMT  

CityClubLive: Moving on to privacy concerns discussion - how are specimens collected, minimum standards, etc #healthcare
Oct 25, 2010 07:45 PM GMT   

CityClubLive: A lot of the biobanks forming now are very specific to a single disease #healthcare
Oct 25, 2010 07:44 PM GMT  

CityClubLive: Discussing autism org's biobank - describing the parents being really being the driving force in research & movement #healthcare
Oct 25, 2010 07:43 PM GMT  

CityClubLive: The biggest breakthrough we've seen is in cancer research (Edwards) #healthcare - determining which chemo will work for which person
Oct 25, 2010 07:42 PM GMT  

CityClubLive: Russell - "I think that's the promise of biobanks" - they don't exist without samples from the public #healthcare
Oct 25, 2010 07:40 PM GMT  

CityClubLive: When you get the public involved in these processes, "they become a full partner" - they push the process along faster #healthcare
Oct 25, 2010 07:40 PM GMT  

CityClubLive: Too many biobanks= harder to manage. Lower quality samples, different ethical standards etc. Does every state/hospital need one? #healthcare
Oct 25, 2010 07:38 PM GMT  

CityClubLive: When the biobank project scales up - "the ethical issues also scale up" (Edwards) #healthcare
Oct 25, 2010 07:36 PM GMT  

CityClubLive: Biobanks create a central place for data and specimens - not every scientist has to start from scratch #healthcare
Oct 25, 2010 07:36 PM GMT  

CityClubLive: Is the promise of biobanks real? #healthcare
Oct 25, 2010 07:35 PM GMT  

CityClubLive: Ethical questions, such as the fact that pregnant woman are a vulnerable population #healthcare
Oct 25, 2010 07:35 PM GMT  

CityClubLive: To do research at GAPPS, they needed high quality specimens linked to specific data/info about them- enter the biobank #healthcare
Oct 25, 2010 07:34 PM GMT  

CityClubLive: GAPPS just started a biobank http://www.gapps.org/leadership/ #healthcare
Oct 25, 2010 07:33 PM GMT  

CityClubLive: IRB = institutional review boards - term used a lot with regard to human subjects division #healthcare
Oct 25, 2010 07:31 PM GMT  

CityClubLive: Edwards: does ethics consulting, describing the questions she gets when researchers are starting biobanks #healthcare
Oct 25, 2010 07:30 PM GMT  

CityClubLive: Referring to biobanks as "libraries of flesh" - this was in Wired magazine #healthcare
Oct 25, 2010 07:26 PM GMT   

CityClubLive: Changing from "reactive" to "proactive" in medicine in the future. #healthcare
Oct 25, 2010 07:25 PM GMT  

CityClubLive: Reminders abt @LVGuide (www.livingvotersguide.org) & the rest of events in Community Matters Campaign: http://www.seattlecityclub.org/events
Oct 25, 2010 07:22 PM GMT  

CityClubLive: We're getting started! Refresh your memory of our panelists here: http://bit.ly/b7gfYc (expand) #healthcare
Oct 25, 2010 07:20 PM GMT