This is a summary of the ISBER Annual Meeting that was held in Dallas recently. It is one person’s perspective and entirely subjective, if you have any comments or anything to add, just let us know!
ISBER is the biggest annual biobanking meeting and attracts a friendly and vocal group from around the world. There is always great opportunity to chat to people from far flung places who have the same challenges in biobanking. There were about 650 attendees which was slightly down from recent meetings as some people couldn’t get visas unfortunately, and others who went to the Global Biobank Week last September weren’t there. The scientific program covered an interesting range of topics and met with good general approval. A lot of the presenters were from the US, given this was held in North America.
For the first time there was a Technician Workshop held on the day before the symposiums started. I understand there were about 45 attendees and it was useful to those who attended. The meeting started in earnest on Monday morning with a welcome to the plenary from Zsis Kozlakdis the ISBER president. The voting feature in the conference app was introduced by him, and initial use confirmed that the attending scientists observed that things really were bigger in Texas!
The keynote speaker was Ignacio Wistuba from the MD Anderson Cancer Center in the University of Texas. The first half of his presentation was an overview of the work they do for lung cancer on profiling their specimens and developing biomarkers: molecular and immunology profiling, rare tumor focus, clonal evolution and phylogenetic analysis. The second half of this presentation covered the APOLLO Moon Shot Platform: Adaptive Patient-Oriented Longitudinal Learning and Optimization.
After coffee, James Ayala provided an inspiring overview of the Genome Resource Bank setup in China that supports Giant Panda breeding. There were some interesting facts about these pandas (cubs typically way 51g when born) and positive improvements with birth survival rates now up to 80%. They have setup a dedicated wildlife park and had spent a lot of time on public education. There was an interesting question about how global warming is impacting on the Giant Panda natural habitat. Pandas are moving to higher altitudes as they have a preference for lower temperatures which could be problematic for their bamboo food source. China is rolling out initiatives to make their cities greener, such as electric car schemes, in an effort to combat their developing economy.
Sarah Laskey from 23andMe then gave a presentation about their research cohort of genetic data. They use an adapted Illumina array to extract the genomic data on their customers. About 80% of people opt-in to participate in research, which generally involves completing specific lifestyle surveys to supplement the raw genetic data. Approximately 75% of their 5M customers have completed 1 or more of these surveys resulting in 1Bn phenotypic data points and over 100+ papers published. Sarah gave an overview of a diet comparison study to help tackle obesity. By gathering the lifestyle data to combine with the sequenced information, they are able to give people an indication of whether they are genetically disposed to become overweight and if so, which factors (foods or lack of sleep) are likely to have the bigger impact.
The last speaker of the plenary session was Michael Lang from McGill University who gave an overview of smartphone consent and mHealth Apps. He went through the launches of the iOS and Android platforms that have enabled these Apps: ResearchKit and ResearchGate respectively. He also went through the first generation of participant led projects, such as, MyHeart Counts, Mole Mapper, etc. These Apps have advantages with the ability to self-enrol and provide much more frequent data than periodic clinical visits. On the downside, there is selection bias and participant retention after launch is difficult. There are well documented approaches to electronic consent good practice, but there are different risks with the possibility that a child or other person who does not meet the eligibility could enrol.
The next two days were spent at the booth in the exhibition hall which is very different from attending the presentations. It was great to meet lots of biobankers at our booth and hear about their software needs. There were various new offerings and services for the attendees to browse throughout the exhibit hall and of course lots of freebies! The most bizarre being the foam stress balls in the shape of a sperm, quite a few of which ended up floating in the water feature of the hotel lobby.
The 5K run/walk/sleep was on first thing on Tuesday morning. The run took place alongside a river area just outside downtown. Proceeds from the 5K are used to support the ISBER travel awards and the recipients were there to lead out the runners. There was a great mix of runners from a few folk who run every day right through to those enjoying a relaxing dawn ramble along the banks. The highlight was a topless Bill Grizzle accosting/encouraging the final few runners over the line. Photos of which were apparently making the rounds on various WeChat groups in China.
A networking dinner was held on the Wednesday night at Eddie Deen’s Ranch where the attendees got to chow down on Texas BBQ, line dance and practice their lasso skills from a wooden horse. The closest thing we had to an ISBER social media star was also at the event. There was a magician wandering amongst the tables and some impressive karaoke numbers near the end of the night.
The final day started early with a choice of workshops. There was one on EU GDPR with presentations from Mark Barnes from Ropes & Gray LLP and Michaela Mayrhofer from BBMRI. Mark presented on what US biobanks should consider if they collaborate or have activities within the EEA. He pointed out that health information falls under a “special category” of personal data. There are differences between the HIPAA concept of safe harbor anonymisation and de-identification under GDPR. As long as there is any link kept between the de-identified data and the original person (no matter where this link is held) the de-identified data is still considered as personal data under GDPR. Michaela spoke about how to deal with the national Data Protection offices within the different EU states. She pointed out that their initial focus will be on the large Tech companies and financial sector who have prompted this whole data protection harmonization effort. It will probably be 6-12 months before health research is even on the radar in most countries. The guidelines for health research are inadequate at the moment, but this is most likely because it will not be the initial area of focus. The advice from the session was to review existing consent processes as they should already cover the principles of data protection (which have not changed). Also, ensure there is good staff training and enter into a communication with the different Data Protection offices that is respectful and assumes they have no knowledge of what is involved in medical research (as they probably don’t).
Of the final morning symposiums, there was one on Quality Management. Joseph Roberts from the Alberta’s Tomorrow Project presented on selection bias impact on downstream data results. He went through the population characteristics of donors in their biobank compared to the census information for the province of Alberta as a whole. Tomoaki Hagiwara from the Tokyo University of Marine presented the work which has been done to improve the freezing of tuna meat. Much of what he presented was relevant to freezing samples for biobanking. He mentioned the positive results they have found in the use of anti-freeze proteins. Uwe Oelmuller from QIAGEN in Germany then offered updates from the SPIDIA project. This is an EU-wide project that started funding under FP7 and unusually, was renewed under H2020. The aim is to tackle the pre-analytical diagnostic errors that lead to deaths and adverse effects. It is developing a collection of standardized pre-analytical procedures for in-vitro diagnostics. Nine CEN technical specifications were developed under the first funding and twenty CEN/ISO standards are planned under the second funding. The session finished with Daniel Simeon-Dubach and Koh Furata giving an overview of how the ISBER Best Practices 4th Edition was developed.
Over lunch there were a variety of roundtable discussions attendees could participate in. James McNally from the University of Michigan facilitated an introduction to Common Data Elements being put together by the US National Center for Biotechnology Information. This turned out to be a request for help in reviewing and editing the definitions that will be used for Biospecimens. There is already a lot of this work being done in the ISO Biotechnology working groups, SNOMED, HL7 and other community standards like SPREC and MIABIS. So hopefully they will reference what is already existing rather than start something new. The action at the end of the roundtable was for the ISBER Standards committee to discuss and they may set-up a task force to assist.
Finally, the last session was a special topic workshop on the upcoming ISO standard, CAP BAP (College of American Pathologists, Biorepository Accreditation Program) and the ISBER Best Practices 4th Edition. There was an audience poll that showed about 60% were aware of the upcoming ISO standard. Nilsa Ramirez, a pathologist from the Nationwide Children’s Hospital in Columbus, gave an overview of the CAP BAP process. CAP may even offer the ISO standard in the future to its territories. So far, 57 biobanks have been accredited in the US since the program launched in 2012 and 12 are currently in process. The ISO standard 20387 ‘General requirements for biobanking’ is at the FDIS stage where only editorial comments can be made before a final vote. Depending on the schedule of standards that ISO have, this could be released by the end of 2018. The accompanying guidelines will follow within a few months. The ISBER Best Practices is now in its 4th Edition and work has already started on planning the 5th. It is essential reading for any biobank and is being translated into many languages including Spanish, French, Chinese, Korean and Japanese.
That wrapped things up for another year. The next meeting will be in Shanghai in early May 2019, before heading back to the west coast of the US in 2020. The common themes of the conference seemed to be that sustainability it still a vital concern for biobanks and that data sharing must continue to improve. Collecting microbiome samples were also mentioned in quite a few presentations as an area that is gaining prevalence to support research. All-in-all it was a good conference as it enabled the sharing of knowledge and resources.