Executive Summary 

Today much of the data (also referred to as information and knowledge) in Big Data comes from the living individual or the once living individual enmeshed in a living world environment. Today much of the scientific community and the human population at large see the earth and even the stars and space in general as an interconnected web of the living and the once living. In fact in life science and biology an emergent third state of individual living, not just human, is beginning to be articulated as a dormant individual in addition to an alive or dead individual. The full implications of the dormant state of individual living is beyond the scope of the present Big Data work but will at every turn have an effect on the development and governance of Big Data.

It is fair to say that few developments in contemporary culture, technology and science reveal more about the intractable interconnectivity of living individuals than Big Data. Big Data often shows how and how much individual life needs other individual life and that the interconnectivity has an essential social aspect. It is fair to see organizations and groups as an expression of living individuals’ desire and necessity to interact, to form a social contract among ourselves. A social contact that is trustworthy and which holds our aspiration that our social contract be mutually beneficial to all individuals. In fact, while living individuals associate and re-associate continuously it is somewhat well understood that equality among living individuals particularly in American democracy must be an aspect of their individuality not their association. The ability to perceive life as an individual whole is a pivotal mystery around which our social contact, science and associations are based. The curiosity about living and individuals appears to be an organizing principle for all manner of investigations, the source of economic well-being and an engine to further understanding in all forms.

Today we know that the individual is comprised of many, perhaps an endless series of parts all of which bear more of less to describe the character of the living individual. It is fair to say that there exists among living individuals a sense of being impressed by, even overwhelmed by the muchness of living and all there is to understand and learn about life such that no term has caught on more to express this point in time than a time of Big Data. Even though we are but at the beginning of this undertaking.

Big Data is the creation of living individuals reflexing on their character through biology, life science, computation and information science. Without the ability to gather up, persistently record and review living, the full set of living details might well be lost. Ironically in a time of Big Data the term “life cycle” seems a particularly inadequate frame of reference to guide our investigations as notated above in the concept and life fact of dormancy.

From these features and the promise of greater understanding of living is born from Big Data a classic dilemma for living individuals—Who will own the wealth and power big data contains? Or, better yet, what is the best, most trustworthy and mutually beneficial way to share the wealth and power big data contains? What kind of social contract will we need and what technical implementations and controls will best ensure the well-being of living individuals.

Our apparent endless curiosity of the lifefact along with the promise of large economic returns from processing living individual attributes is creating stressors and pressures for inequity. Living individual attributes has been described as the new money.

Big Data is but the latest human invention that poses a challenge to the promise of an enduring and creative social contract and well-being.  This social interconnectivity is the kernel of the ethical challenges and opportunities Big Data presents and that must be resolved.

Internal to the conundrum of Big Data is that the use of Big Data tends to create more data. Under current techniques and technologies, the more data and data sets on an aspect of living the less privacy for the living individual exists. Today there is no viable solution to creating and ensuring privacy for living individuals. And this is before fifty billion sensors have been released into the world. Yet living individuals must be able to weigh in on life without privacy before their privacy is removed.  Currently there is no mechanism for living individuals to weigh in on privacy.

Big Data for all its rapidity and volume today requires thoughtfulness, self-examination and discipline in action and the development of new kinds of choices including ethical choices. A set of choices that makes concrete and real the principle that a living individual’s very mutability is a primary source of its value and that exploitation and inequity reduce the individual’s value. It is for this reason that the benefits of the ownership, value and governance of a living subject’s data must be drawn out and studied in a time frame adequate to go beyond limited self-interest. There must be standards and mechanisms for checks and balances to have effect.

All parties in this new domain—engineers, scientists, citizens, mothers, fathers and children need to understand and have a role in its governance if the fullest measure of Big Data’s value is to be realized.

At present many entities are engaged in a situation where individual living data is treated as a “free” natural resource where the first one that “captures” it has a profound and apparent irreversible advantage. There is a kind of a stampede and gold rush underway to “mine” it, to possess and own it. All of this is happening before the data has given anything back to the living or shown the capacity to add value to living and in a way that is commensurate.

Many—but not all—of the conundrums of Big Data such as ownership, value and privacy have created a third party stampede and tussling over the possession of the individual subject’s data.

Today in many sectors of our human community such as healthcare, financial services, education and government it is customary to assert—and not without reason—that more data about an individual subject will lead to better decisions about how to manage the business and innovation of that sector in profitable ways. In part this has led to competition to acquire more and more data about living subjects. In healthcare, for example, this often means that the most useful data is embodied in individual human behavior. Because most living is more or less individuated and the subject of the data, the problem of data privacy and governance is built into Big Data analytics and its usefulness. Certain key questions and concerns then are central to the aspirations and application of Big Data.

The purpose of this White Paper is to flesh out these questions, concerns, solutions and aspirations as they impact on living individuals and communities of living individuals particularly in the un-and-underserved and a few primary archetypal uses cases.

 

At present among the key questions to be highlighted are—

 

• Does a particular use of Big Data increase the survival and well-being of living individuals?
• What are the implications for life and living individuals from a sensor driven extractive and capturing approach to Big Data?
• Is the Big Data Subject alive?
• Should our solutions be the same for bad actors and the malevolent?
• What other ways are there to harness the power and wealth of living details while furthering the freedom living needs for creativity. How to build the possibility for realizing these new ways into Big Data Analytics and the Reference Architecture?

 

 

THE CHALLENGE

How to govern and value the data that is captured and/or collected in databases and other ICT systems so as to realize the wealth inherent in large stores of data. This white paper will demonstrate solutions on two emblematic use cases clusters, first the un-and-underserved and 3 primary archetypal use cases while exploring the role and power of inclusion in data sets. (To be attached).

 

THE SOLUTION

The NIST Big Data Public Working Group practice guide <title> demonstrates how data scientists and citizens can instantiate NIST Big Data Reference Architecture (NBD-RA) to address the un-and- underserved, and 3 primary archetypal use case in the financial services, healthcare and nonprofit sectors.

 

This White Paper further demonstrates how the central questions and concerns including security, privacy, data governance, ownership and value can be addressed and supported throughout the governance of Big Data analytics lifecycle. This includes specifically how to interact with NBD-RA components – Big Data Definitions and Taxonomies, Big Data Governance including Provenance, Curation, Preservation and Processing, the Data Provider, Big Data Analytic Provider, Big Data Framework Provider, and Big Data Consumer and Big Data Subject’s Experience.

 

The guide:

1. Identifies key areas for innovation needed to sufficiently analyze the given
2. Identifies the use case characteristics needed to sufficiently govern and analyze the given dataset with (analytics )

 

3. Maps un-and-underserved and primary archetype characteristics to Big Data Analytic Provider
4. <others…>

 

BENEFITS

The white paper is based on an ethical approach and assumption that the benefits, including monetary from Big Data analysis need to be:

A: inclusive of all the living interests of the data subjects and stakeholders from which the benefits are drawn.

B: equitable to all the data subjects and stakeholders from which the benefits are draws.

C: should demonstrate through a metrics to be discussed in due course how the capacity for life and individual living is enhanced by and through the collection, development, analysis and governance of the data.