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Life-Cycle Decisions for Biomedical Data The Challenge of Forecasting Costs (2020) / Chapter Skim
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7 Potential Disruptors to Forecasting Costs
Pages 109-118

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From page 109...
... There is no way to fully anticipate factors that might radically affect the costs of future data preservation, archiving, and use. This chapter focuses on certain emerging challenges spanning different dimensions, including • biomedical data volume and variety, • advances in machine learning and artificial intelligence (AI)
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From page 110...
... Electronic medical records and small data collected at individual laboratories that must be aggregated with existing data sets also present challenges to efficient data analysis in the quest for actionable knowledge. In the foreseeable future, the biomedical research community will experience spurts in data growth that will tend to either (1)
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From page 111...
... These changes could easily affect free and infinite storage by adding charges to computing and networking around the data, most of which are not built for multicloud solution scenarios. As discussed in the previous section, there will likely be a shift away from merely storing data toward approaches that allow continuous extraction of value from data using machine learning and AI techniques.
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From page 112...
... Last, the increasing number of non–von Neuman architectures and machine learning accelerators will require careful consideration regarding co-locating data and computing based on the models that need to make use of co-dependent composable services at the digital continuum. DEVELOPMENTS WITH POTENTIAL COST SAVINGS Of all existing technologies, a few may reduce costs within shorter time frames.
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From page 113...
... Because many challenges associated with cloud computing are related to account management and account monitoring, CloudBank is actively building methods to enable diverse users to manage their cloud credits through business operations functions and services (Norman, 2019; San Diego Supercomputer Center, 2019)
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From page 114...
... Historically, IRBs and other governance and compliance actors have considered genomic data not to constitute "identifiers" in and of themselves, without being linked to additional information. From 2011 to 2017, federal regulators engaged in public notice-and-comment rulemaking to revise the Common Rule, whose substance had not been significantly changed since 1991.
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From page 115...
... and information collected for a clinical trial subject to the Common Rule, biomedical researchers increasingly collaborate with for-profit businesses around non-HIPAA data, including consumer wearables, mobile health apps, and genetic data from direct-to-consumer testing companies. The anticipated impact on research of the GDPR and the CCPA are approximately the same: both contain various exceptions for research (e.g., the right to erasure, or so-called right to be forgotten, has only 10  The website for GDPR is https://gdpr-info.eu/, accessed December 13, 2019.
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From page 116...
... Tiered consent may involve costly tracking to ensure adherence to those heterogeneous preferences. State 1 HSR activity costs are direct costs charged to the funder, while activity costs associated with accessing data in States 2 and 3 are indirect costs that are typically at least offset by grant funding.
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From page 117...
... and sandbox, and retrospective data use audits, to preserve data privacy and security and participant trust. Merely developing these governance mechanisms required significant person-hours before actual data access began.
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From page 118...
... 2017. Regulating research with biospecimens under the revised Common Rule.
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Key Terms

  • common rule
  • accessed december
  • machine learning
  • potential disruptors
  • data access

  • big data
  • forecasting costs
  • data storage
  • biomedical sciences
  • cloud computing

  • data volume
  • data privacy
  • federal statistical
  • health insurance
  • statistical agencies

  • insurance portability
  • accountability act
  • access data
  • analyze data
  • responsible data

  • data preservation
  • identifiable data
  • biomedical scientists
  • research involving
  • research activity

  • revised common
  • affect costs
  • future computing
  • personal information
  • agency guidance


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