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Genetic Controls, Eugenics, Gene Therapy, & Transhumanism

Decision Making in Medical Ethics

Helen Frankos

on 16 July 2014

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Transcript of Genetic Controls, Eugenics, Gene Therapy, & Transhumanism

Genetic Controls: Eugenics, Gene Therapy & Transhumanism
How William's Syndrome affects people
How William's Syndrome affects people
Jesse Gelsinger Case:
The First Gene-Therapy Death
Jay Al-Khalili & Helen Frankos
First draft of the human genome published in the journal
in February of 2001
“This information can be thought of as the basic set of inheritable "instructions" for the development and function of a human being.”

- National Human Genome Research Institute
Social Controversy
Who was involved in the human genome project?
Francis S. Collins
Craig Venter
1. Identify all genes of the human genome

2. Sequence all nucleotides of the human genome

3. Develop databases to store this information

4. Develop tools for data analysis

5. Address ethical, legal, and social issues

6. Sequence model organisms
John Sulston
Transhumanism is any attempt to extend human life, it is also a movement that has been slowly developing over the past two decades by H+.

Genetic Controls-

Recombinant DNA-

Genetic Engineering-

Stem Cells-

Gene Therapy-



Genetic Disease - disease where genes affect particular biochemical, cellular, or physiological defects

Genetic Screening - any activity involving locating or advising people with genetically connected diseases

Genetic Counseling - determining how likely it is for a specific couple's child will have a certain disease

Prenatal Genetic Diagnosis - using technology to secure information about the developing fetus in utero

Ethical Issues -
Is there a right to have children who are likely to be impaired?
Is society justified in requiring people to submit to genetic screening, counseling, or prenatal diagnosis? Are physicians obligated to inform prospective parents about the genetic tests that are available?
Do patients have a right to be informed of all the results of a genetic test?
Should public funds be used to pay for genetic tests when an individual is unable to pay?
Define Key Terms
Genetic Control Highlights
Gene Therapy
Future of humanity

There is really no true history date on when transhumanists started, all we know is that is goes back over 60,000 years ago.
direct genetic intervention in an organism's genome to enhance traits and capabilities for many
reasons; curing disease, improving immunity, bone/muscle regrowth, fertility, & even cloning
cells normally found in human embryos, that have the ability to transform into specific other types of cells like muscle cells, brain cells, skin cells, etc.
Transhumanist are trying to use this movement as a way to escape death and aging, which will eventually deplete our resources and slowly destroy the planet due to over population.
Some argue there is just simply not enough materials (food, water, space, etc.)to support an exceeded population
The rate of maturity would be slowed to a much later age...age 50... today's average is between 22 and 26 years old.
The likely years for the most expected change is between the 2030's and 2040's
They expect to take our mind and upload it onto an external disc to
insert into an artificial body
experimental technique for directly changing a person's genes to prevent or treat disease.
an organisms complete set of DNA
*Ronald Munson, . (United States: Thomas Wadsworth, 2008), 176, 180.
*Lewis Vaughn, . (New York , W. W. Norton & Company, 2013), 162.
Intervention and Reflection: Basic Issues in Bioethics
deliberately manipulating the nucleotide sequqnces in DNA to make desired changes involving
techniques for recombining DNA from different sources
Doing Ethics: Moral Reasoning and Contemporary Issues
genetic engineering/modification; direct manipulation/control of an organism's genome using biotechnology.
(positive) the aim of increasing the number of favorable genes in the human population
(negative) aims at decreasing the number of undesirable or harmful genes
any attempt to extend human life; a movement that has been slowly developing over the past
two decades by H+.
Genetic Intervention: Screening, Counseling, & Diagnosis
Genetic Intervention:

*Ronald Munson,
Intervention and Reflection: Basic Issues in Bioethics.
(United States: Thomas Wadsworth, 2008), 165, 167, 170-71, 174-75.
Allows for the ability to identify hundreds of genetic conditions and vulnerability of diseases
Genetic testing includes information from DNA, chromosomes, biochemical and/or proteins.
Direct to Consumer, Prenatal and Embryo Screening available
Would you want to know? What would you do with your results?

Genetic Screening

Don’t Test
Where do we draw the line?
What conditions justify the aborting of the child
Test aren’t always predictors of future conditions
Will lead to discrimination against child/people with identified condition/disability.
Devalues, socially isolates and marginalizes people living with these conditions currently
Goes against Natural laws

Best interest of the child and parent. (Maximum good)
Testing allows for the most informed/educated decision.
Decision is up to parent, not society, since they carry the heaviest burden.
If we can prevent it, its our moral responsibility to reduce misery of
suffering individual. Reduces ‘misery’. (act-utilitarianism)

Genetic Screening Ethics/Morals

Angelina Jolie: Women who carry the genes that cause breast and/or ovarian cancer are up to 85% likely to develop that cancer. Made the informed decision to perform double mastectomy and remove ovaries.

Pregnant mothers can test unborn child for genetic traits that lead to Down Syndrome or Tay-Sachs and make decision to abort. Polls show a 50/50 split in what most people would do when presented with options

Genetic Testing Cases

Belief that we could improve the genetic constitution of the human species by breeding desirable traits and reducing negative traits.

Instituting control over human reproduction thru abortion, sterilization, planned conception.

Became popular in 1920s as a way to control welfare populations in low income demographics. Started with white populations then moved to blacks.

31 separate states had legal eugenics programs. Public records reveal tens of thousands of Americans were subjected to this treatment.


Positive: encouraging reproduction by persons presumed to have inheritable desirable traits. Ex: Intelligence, beauty, musical or artistic abilities and other valuable characteristics

Negative: discouraging/preventing reproduction by persons having genetic defects of presumed inheritable undesirable traits. Ex: Down syndrome, alcoholism, sickle cell disease and other genetic diseases or people who were a ‘burden’ on society.

Positive and Negative Eugenics
1967 Elaine was raped as a 13 year old child. 9 months later she gave birth via C-Section. During the surgery doctors sterilized her without previous consent.

Deemed ‘promiscuous’ and ‘feeble-minded’ by doctors she was never able to give birth to other children.

Later she sued state for $1 million for the grief and pain of her ordeal but lost case. Jury said ‘no law was broken’ at the time.

As of 2013 North Carolina is working on $10 million in reparations for over 7,600 residents and their families who were unwillingly and unknowingly sterilized.

Elaine Riddick vs. North Carolina

Kantian: laws regulating contraception, sterilization or forced abortion would violate the autonomy and dignity of an individual

Utilitarian View: possibility of increasing positive traits is favorable. But goal to improve human race is too distant and uncertain to justify restrictions and unhappiness.

Natural Law forbids use of contraception, sterilization abortion and embryo selection = no negative eugenics. Does not follow the dictates of Nature.

Prima Facie says if the child is going to suffer from a genetic disease we have duty to prevent the child from being born

Rawls theory would advocate abortion to prevent suffering and cost associated with care for the sick of people who couldn’t take care of themselves.

Ethics Involved

Enacted May 2008
Prohibits employers from requiring genetic testing as condition of hiring, firing, promotion, etc…
Prohibits employers from requesting or purchasing genetic information about employees or family members.
Prohibits insurers from requesting an individual take a genetic test.
Prohibits an insurer from using genetic information in determining an individuals eligibility for health insurance.
Prohibits employers and insurers from disclosing genetic information about an individual.
Prohibits an insurer from using genetic information in determining an individuals eligibility for health insurance
Prohibits employers and insurers from disclosing genetic information about an individual
Health Care reforms in 2014 forbid insurers from rejecting applicants with preexisting medical conditions

GINA: Genetic Information Nondiscrimination Act

Prohibits an insurer from using genetic information in determining an individuals eligibility for health insurance
Prohibits employers and insurers from disclosing genetic information about an individual
‘Health Care reforms in 2014 forbid insurers from rejecting applicants with preexisting medical conditions

GINA continued

Gene Therapy
Transhumanism can also bring the ability to move our conscious and intelligence onto an external disc.
Ronald Munson,
Intervention and Reflection: Basic Issues in Bioethics.
United States: Thomas Wadsworth, 2008.

Lewis Vaughn,
Doing Ethics: Moral Reasoning and Contemporary Issues
. New York: W. W. Norton & Company, 2013.

'Sterilization Victims Speak Out' NBC Nightly News. 7 Nov 2011. <rockcenter.nbcnews.com/_news/2011/11/07/8640744-victims-speak-out-about-north-carolina-sterilization-program-which-targeted-women-young-girls-and-blacks> WEB 10 July 2014

Cold Springs Harbor Laboratory. Eugenics Archive. <eugenicsarchive.org/eugenics/> WEB 09 July 2014

"YouTube." YouTube, n.d. Web. 5-12 July 2014.

"Humanity+." http://humanityplus.org, n.d. Web. 5-14 July 2014.

"Google Images." Google Images. N.p., n.d. Web. 5-12 July 2014.

In 2008, as part of a rebranding effort, the WTA changed its name to "Humanity+" in order to project a more humane image. Humanity Plus and Betterhumans publish h+ Magazine, a periodical edited by R. U. Sirius which disseminates transhumanist news and ideas.
According to philosophers who have studied and written about the history of transhumanist thought, transcendentalist impulses have been expressed at least as far back as in the quest for immortality in the Epic of Gilgamesh, as well as historical quests for the Fountain of Youth, Elixir of Life, and other efforts to stave off aging and death.
Nikolai Fyodorov, a 19th-century Russian philosopher, advocated radical life extension, physical immortality and even resurrection of the dead using scientific methods.
Computer scientist Marvin Minsky wrote on relationships between human and artificial intelligence beginning in the 1960s.
In 1972, Robert Ettinger contributed to the conceptualization of "transhumanity" in his book Man into Superman.

In 1986, Eric Drexler published Engines of Creation: The Coming Era of Nanotechnology, which discussed the prospects for nanotechnology and molecular assemblers, and founded the Foresight Institute.
In 1990, More, a strategic philosopher, created his own particular transhumanist doctrine, which took the form of the Principles of Extropy, and laid the foundation of modern transhumanism by giving it a new definition.
In 1998, philosophers Nick Bostrom and David Pearce founded the World Transhumanist Association (WTA), an international non-governmental organization working toward the recognition of transhumanism as a legitimate subject of scientific inquiry and public policy.
In 2006, a political struggle within the transhumanist movement between the libertarian right and the liberal left resulted in a more centre-leftward positioning of the WTA under its former executive director James Hughes
People's genetic profile might come to be considered as important as their appearance, income, or personality
Key Events in Transhumanism
The First Amendment of the U.S. Constitution states: “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof…”
The Constitution forbids the establishment of religion while allowing the teaching and funding of science.
The Supreme Court did have a series of Vietnam-era cases in which it had to interpret the statutory requirement that conscientious objection to military service be religiously based.
The Court said that
“religion” in the statute was broad enough to extend to a belief which “occupies in the life of its possessor a place parallel to that filled by the God” of traditional religions
The Politics
Will new technologies only benefit the rich and powerful?
According to Humanity +, just like all other technologies, these new ideals will become cheaper and more open towards the public

Do transhumanists advocate eugenics?
Transhumanists believe that eugenics is the exact opposite of transhumanism. Humanity+ states that "Parents must be allowed to choose for themselves whether to reproduce, how to reproduce, and what technological methods they use in their reproduction. The use of genetic medicine or embryonic screening to increase the probability of a healthy, happy, and multiply talented child is a responsible and justifiable application of parental reproductive freedom.

Will post humans or super intelligent machines pose a threat to humans that aren't augmented?
Humanity+ states, "...The scenario in which 'the enhanced' form a pact and then attack 'the naturals' makes for exciting science fiction but is not necessarily the most plausible outcome. Even today, the segment containing the tallest 90 percent of the population could, in principle, get together and kill or enslave the shorter decile. That this does not happen suggests that a well-organized society can hold together even if it contains many possible coalitions of people sharing some attribute such that, if they unified under one banner, would make them capable of exterminating the rest.
Ethical Concerns
Jessie had OTC (ornithine transcarbamylase deficiency)
OTC is a rare genetic disorder where the body can't rid itself of ammonia which then accumulates in blood
If ammonia reaches crucial levels it can cause coma, brain damage, & eventually death
Throughout his life if Jesse consumed too much protein or any sensitive balances were disturbed he would fall into a coma
When Jesse turned 18 he was involved in a ground-breaking clinical trial test to supply the gene OTC.
Jesse died within 4 days of the gene therapy treatment
*Ronald Munson,
Intervention and Reflection: Basic Issues in Bioethics
. (United States: Thomas Wadsworth, 2008), 73-77.
1.Do you believe that people have a right to use technology to extend their mental and physical (including reproductive) capacities and to improve their control over their own lives?

2.Do you think that by being generally open and embracing of new technology we have a better chance of turning it to our advantage than if we try to ban or prohibit it?

3.Do you expect human progress to result from human accomplishment rather than divine intervention, grace, or redemption?

4.Do you think it would be a good thing if people could become many times more intelligent than they currently are?

5.Do you DISAGREE with the idea that human genetic engineering is always wrong because it is “playing God”?

6.Does your ethical code advocate the well-being of all sentient beings, whether in artificial intellects, humans, posthumans, or non-human animals?

7.Do you believe women should have the right to terminate their pregnancies?

8.Do you think it would be a good thing if people could live for hundreds of years or longer?

9.Would you consider having your mind uploaded to computers if it was the only way you could continue as a conscious person?

10.Should parents be able to have children through cloning once the technology is safe?
Discussion Time
•7-10: You are a transhumanist.
•5-6: You are probably a transhumanist.
•2-4: You have some (trans)humanist tendencies
•0-1: You are not a transhumanist
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