Individual and Collective Rights in Genomic Data: Preliminary Issues

AuthorDavid Koepsell
ProfessionAuthor, philosopher, attorney, and educator whose recent research focuses on the nexus of science, technology, ethics, and public policy
Who Owns You?: Science, Innovation, and the Gene Patent Wars, Second Edition. David Koepsell.
© 2015 John Wiley & Sons, Ltd. Published 2015 by John Wiley & Sons, Ltd.
Individual and Collective Rights
inGenomic Data
Preliminary Issues
Life on earth is bound together by a common heritage, centered around a
molecule that is present in almost every living cell of every living creature.
Deoxyribonucleic acid (DNA), composed of four base pairs, the nucleic
acids thymine, adenine, cytosine, and guanine, encodes the data that directs,
in conjunction with the environment, the development and metabolism of
all nondependent living creatures. (There are ribonucleic acid (RNA)–
based viruses and phages, but these are dependent upon other living crea-
tures for their development and propagation.) DNA is composed of genes,
each of which is a segment of an organisms DNA (which for humans is
three billion base pairs long). Each gene does something specific, encoding
the instructions for a cell’s creation of a protein or an enzyme, which in turn
is responsible for cell differentiation, development, and reproduction. The
mechanisms are now well understood. We know what DNA does in a very
basic sense. The task that science is now completing is developing a full
understanding of the relation and role of each gene, and other information
encoded in DNA, to the development, functioning, and reproduction of
the whole organism. The human genome is of course the one that interests
us most, and understanding the role of each gene in causing us to grow
and function as we do will afford us greater prediction and control over
human health.
The first stage of that degree of understanding was mapping the genome.
Once we know where each individual gene falls on the three billion base pair
chain, we can start to understand differences among individuals and how
they relate to the health and particular characteristics of each organism. The
Human Genome Project (HGP) began in the early 1990s as a publicly funded
2 Individual and Collective Rights inGenomic Data
international project to develop that essential map. Along the way, something
happened that was only vaguely anticipated and that has resulted in private
ownership claims to portions of the human genome. Let us look carefully at
the history of the HGP and the emergence of human gene patents before
considering some of the ethical implications posed by this new trend.
The Current Conundrum
The human genome has been mapped, and daily more of its territory
becomes known and understood. The current map of the human genome is
general, giving us a high‐level view of the landscape, but much of it remains
virgin territory. We have yet to understand precisely how the expression of
the data represented by the map helps make us who we are and function as
we do. Even so, the outlines of the territories of the map are being claimed,
with nearly a fifth of the genome now staked out by various parties, pat-
ented against the claims of other newcomers.1 In fact, the ability to stake
those claims was largely responsible for the early completion of the HGP,
spurred on by market competitors and funded by the future value of own-
ership of DNA sequences and the pharmaceutical promise they hold.2
While Craig Venter’s company, Celera Corp., was investing millions in
developing new rapid sequencing technologies, part of its value statement
and justification to its shareholders for the tremendous capital outlays was
the proposition that genes discovered in the process could be patented and
become part of Celera’s general portfolio of patents. As the US Patent and
Trademark Office (PTO) began granting gene patents, other companies,
individuals and institutions got into the act. Only after the fact did philoso-
phers, lawyers, and activists begin to consider the practical, legal, and ethical
implications of gene patents.
Numerous authors have since considered the practical and ethical issues
involved in granting ownership over parts of the human genome. The range
of considerations has spanned concerns over autonomy, dignity, economic
efficiency, and other important ethical considerations. Most people, when
confronted with the fact that their genetic code has been partly patented by
a plethora of universities, corporations, and research institutes, visibly
blanch and insist that it ought not to be so. It assuredly is so, and a quick
search of the PTO filings will reveal thousands of patents currently owned
on portions of your genome and mine.3 How can this be? Is it right? Don’t

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