BioEthics and Research Ethics

Practice flashcards covering the history of the Human Genome Project, legal acts and court cases regarding genetic patents, and ethical theories in research.

Vannevar Bush ($1890$-$1974$)

The individual who set the plans in place to establish the NSF, NIH, and other agencies for scientific development after WW2.

Robert Sinsheimer

A scientist at UCSC who originally proposed the idea for the Human Genome Project but was unable to secure funding or agreement.

Charles Delisi

Director of the Office of Health and Environmental Research (OHER) at the DOE who picked up the HGP project to study radiation effects on survivors in Hiroshima and Nagasaki.

Renato Dulbecco

President of the Salk Institute for Biological Research who advocated for the HGP in an article for Science, focusing on its potential for cancer research.

Human Genome Project (HGP)

A project that began in $1990$ aimed at mapping the entire genetic complement of human beings, consisting of approximately $3,000,000,000$ base pairs of DNA.

NCHGR

The National Center for Human Genome Research, led by James Watson with an initial budget of $59.3$ million dollars.

ELSI

Ethical, Legal, and Societal Implications; a program established by James Watson that utilized $3-5\%$ of the HGP budget to study issues such as privacy and discrimination.

Bermuda Conference of $1996$

A meeting where six countries agreed that all genome information generated by the HGP would fall into the public domain.

Bayh-Dole Act ($1980$/$1981$)

The University and Small Business Patent Procedures Act that granted intellectual property rights to businesses and universities for research funded by federal grants.

Stanford v Roche ($2011$)

A court case that tested the Bayh-Dole Act regarding whether an inventor could unilaterally terminate a university's statutory rights by assigning them to a third party.

Copyright

A legally held position of ownership over the actualization of an idea.

Trademarks

Legal protections for unique and valuable expressions or symbols that gain recognition in the commercial marketplace.

Trade Secret

Protection for information with competitive value that falls under contract, espionage, or theft laws.

Patent

A government grant of legal rights for useful inventions or discoveries, typically lasting for $20$ years.

USPTO

The United States Patent and Trademark Office, which handles patents for machines, compositions of matter, and methods.

Negative Rights

A type of right granted by patents, meaning others have a duty not to interfere with the property holder's exclusive rights.

Diamond v Chakrabarty ($1980$)

A Supreme Court case that ruled life forms, such as an oil-eating microbe, are patentable.

Patent Thicket

A concept used to dissuade competition from innovating around a patent by creating overlapping intellectual property claims.

Compositions of Matter

A types of patentable invention that includes isolated and purified genes and derivative products like insulin.

Public Domain

Actualized ideas that can be used by anyone without permission, such as the output of the HGP after the Bermuda Conference.

Expressed Sequence Tags (ESTs)

Short sequences of cDNA associated with genes of unknown function that Craig Venter attempted to patent in $1991$.

Shotgun Sequencing

A method used by Craig Venter for the bacterium Haemophilus influenzae that involves fragmenting the genome, cloning fragments, and using computers to align them.

Celera Genomics

The private company formed by Craig Venter to human genome sequencing with restricted data access, creating a race with the public HGP.

Proteomics

The identification of the function of all proteins encoded by the genome.

AMP v. Myriad Genetics ($2013$)

A Supreme Court case that unanimously ruled naturally occurring human genes cannot be patented, though synthetic cDNA can be.

Canavan Disease

A recessive degenerative brain disorder common in individuals of Ashkenazic Jewish descent, characterized by a lack of the enzyme aspartoacylase.

Unjust Enrichment

An equitable doctrine requiring three elements: the plaintiff offered value with expectation of return, the defendant benefited, and it would be inequitable for the defendant to keep the benefit without payment.

Common Law

A legal system relying on rule of law and precedence that was eventually fused with Equity in the late $19th$ century.

Equity

A legal system that originated to provide relief from narrow Common Law judgments, administered by the Court of Chancery and now codified above law.

Indirect Complicity

A moral concept stating that if a first outcome is achieved through an immoral act, every subsequent outcome carries the taint of that act.