6 Bio Ethics
6 Bio Ethics
6 Bio Ethics
Scientists have been able to help patients suffering from over 70 differ-
ent diseases and injuries—including brain cancer, leukemia, lymphoma,
Crone’s disease, Lupus, heart damage, Parkinson’s, Sickle cell anemia,
and end-stage bladder disease—using adult stem cells. Conversely, mor-
ally-problematic embryonic stem-cell research has not helped a single hu-
man patient.
ers. Moreover, research breakthroughs since The U.S. Supreme Court has never ruled on
2007 are opening the door for the reprogram- the legal status of a human embryo outside of
ming of adult stem cells into the embryonic the mother’s womb. In August 2001, Presi-
stem cell state—without the use or destruction dent George W. Bush announced that federal
of human embryos. funding would be allowed only for research on
then-existing embryonic stem-cell lines. But in
Adult stem cells have helped patients with over March 2009, President Barack Obama signed
70 different diseases, with more being continu- an Executive Order reversing that policy.
ally added. The future of human cures is not in
destroying some humans to treat others. It is in It is, therefore, up to the states to institute pro-
ethical treatments that treat all human life with tective measures. Currently, seven states either
dignity and respect. But proponents of embry- expressly or impliedly ban DER on embryos
onic stem-cell research have purposely created created through in vitro fertilization (IVF) or
a false impression cloned human em-
that embryonic stem bryos, and 19 states
cells have a proven ban fetal experimen-
therapeutic use, when tation. In addition to
they have in reality these direct bans on
never helped a single research, at least six
human patient. states restrict funding
or the use of state fa-
In addition to the facts cilities for DER, and
that 1) it is necessary 16 states have passed
to destroy nascent hu- legislation encourag-
man life to obtain em- ing the use of adult
bryonic stem cells for stem cells or umbili-
research, and 2) embryonic stem-cell research cal cord blood and/or the donation of umbilical
has never helped a human patient, such re- cord blood.
search is also immoral because the only way to
obtain the human eggs necessary to create em- AUL has drafted several models to help states
bryos is to exploit women. A woman normally curb ineffective, unethical research and pro-
only produces one or two eggs per reproduc- mote ethical research that is already making a
tive cycle. To obtain enough eggs for research, difference. These models include the “Destruc-
a woman must take drugs that will cause her to tive Embryo Research Act” banning destruc-
super-ovulate, releasing 10-15 eggs at a time, tive embryo research; a “Prohibition on Public
and undergo an invasive surgical procedure in Funding of Human Cloning and Destructive
order to retrieve them. Thus, it is simply not Embryo Research Act”; and an “Egg Provider
possible to obtain enough eggs from willing Protection Act,” focused on preventing the ex-
women to adequately pursue this research or ploitation of women.
treat possible diseases that may come from any
breakthroughs using embryonic stem cells.3
This lack of regulation has resulted in the stor- example, at least 14 states address insurance
age of more than 400,000 cryopreserved (fro- coverage of ART.
zen) human embryos in laboratories across the
United States. Meanwhile, a small number of states have vari-
ous provisions providing that only physicians
In 2004, the President’s Council on Bioethics may perform ART, placing limits on assisted
issued a report, Reproduction & Responsibil- insemination procedures, defining the legal
ity, outlining the lack of regulation of ART. As status of the child created by ART, defining
the Council’s report points the legal status of the parent
out, “[t]here is only one fed- or donor, regulating the use
eral statute that aims at the of public funds or facilities
regulation of assisted repro- for ART, mandating informed
duction: the ‘Fertility Clinic consent for ART, or govern-
Success Rate and Certifica- ing the treatment of human
tion Act of 1992’ (sometimes embryos.
called the ‘Wyden Act’),”
and it only serves two pur- Responsible state and federal
poses: 1) providing consum- regulation is necessary for
ers with information about several reasons:
the effectiveness of ART
services, and 2) providing states with a model • Assisted reproductive technologies,
certification process for embryo laboratories.4 primarily IVF, are the gateway to all
Additionally, the “Clinic Laboratory Improve- future genetic engineering. The cur-
ment Amendments of 1988” govern quality as- rent lack of regulation promotes the
surance and control in clinical laboratories in- creation and destruction of excess em-
cluding those involved in ART, and the Centers bryos and, if not adequately responded
for Disease Control and Prevention (CDC) has to, promotes conditions conducive for
announced a new national ART Surveillance human cloning and other immoral ex-
System. These regulations pale in comparison perimentation on human life in its ear-
to those in place in Great Britain, Germany, liest forms.
Sweden, Switzerland, and many other Euro-
pean nations, where, for example, the number • The health of women undergoing IVF,
of embryos transferred per reproductive cycle who are often injected with hormones
is limited by law. that may cause cancer and other dis-
eases, may be compromised, and sub-
The Council’s March 2004 report further con- sequently-born children may suffer
firmed that ART is little regulated by the states. genetic damage from the procedures.
In fact, as the report noted, “[t]he vast majority
of state statutes directly concerned with assist- • There are increasing numbers of mul-
ed reproduction … are concerned mostly with tiple births (with associated health and
the question of access to such services.”5 For safety concerns), as well as the use
Not only does embryo adoption allow parents AUL has crafted a model bill, entitled the
to choose an alternative other than destruction “Embryo Adoption Act,” for states interested
for research, but it also offers a more attractive in explicitly permitting embryo adoption and
option than donation. When the embryos are bringing it under the auspices of their existing
donated to other couples, as opposed to adopt- adoption laws.
ed by them, the process is anonymous and the
placement is usually determined by the fertility Genetic Testing and Discrimination
clinic’s physician. Receiving couples usually
undergo only basic medical screening and psy- Genetic testing is currently available for 1,500
chological counseling. diseases, and tests for hundreds of others are
currently being developed.6 But, as with other
When embryos are adopted, on the other hand, areas of biotechnological success, ethical is-
the process is typically much more open. The sues have arisen with the advancement of ge-
adopting family will likely have access to the netic testing. For example, can health insur-
child’s history, a potential match for future or- ance companies use the results of genetic test-
gan donation, and the possibility of a relation- ing in granting or denying coverage? Or can
ship with the placing family. Programs such employers screen the genetic information of
as the Snowflake Embryo Adoption Program potential employees before making hiring or
from an egg and discarded, the nucleus Myth: Cloned human embryos are not really
of a somatic (or body) cell containing human.
the genetic material of another entity is Fact: This would mean that Dolly, the first
transplanted into the egg, and an elec- mammal clone, was not a sheep, despite the
tric shock or chemical solution is used fact she was created using a sheep egg and
to trick the egg into believing it has sheep DNA and after birth looked and acted
been fertilized. The egg, containing like a sheep. If cloned human embryos are not
another entity’s DNA, begins dividing human, then what are they? The only logical
as any other early embryo. answer is that a cloned human embryo is fully
human.
• Zygote—a one-cell embryo. From
this one cell will arise every cell in the Myth: We do not owe a right to life to cloned
body. Sometimes referred to as a fer- embryos. They are an unnatural aberration.
tilized egg or “totipotent cell.” Fact: Regardless of the ethical issues sur-
rounding the creation of human clones or why
Myths & Facts a clone was created, if created it should not be
forbidden to live. We do not require the de-
Myth: Embryonic stem-cell researchers are struction of human life when created through
close to finding cures for a host of terrible dis- other unethical means (e.g., rape). Laws
eases, like cancer, diabetes, and neurological against creating cloned embryos should not re-
disorders such as Parkinson’s. quire the clone’s destruction.
Fact: Embryonic stem cells are unable to cure
anyone of anything. Instead, use of the cells in Myth: A ban on destructive human embryo
humans does little good and can do great harm. research or human cloning will stifle scien-
Adult stem-cell research is helping cure or treat tific research or economic development in my
more than 70 diseases, with more work being state.
prepared for or currently in clinical trials. Fact: Few companies even do this research, in
part because there are no foreseeable cures that
Myth: Embryonic stem-cell research, includ- will recoup the dollars needed for investment.
ing the destruction of embryos for their parts, And, if embryonic stem-cell research ends up
is morally and ethically acceptable. not producing cures, companies may not sur-
Fact: Even if breakthroughs using embry- vive long enough to produce any benefit.
onic stem cells do occur, it is still unethical
to destroy human embryos for their “parts.” Myth: Embryos left over from in vitro fertil-
Regardless of the perceived or real benefit of ization (IVF) procedures are just going to die
destroying human embryos, there is no ethi- anyway. We should get some benefit from
cal justification for destroying nascent human them.
life regardless of its origins. It is never right to Fact: It is not necessarily the case that em-
intentionally kill innocent human life to save bryos left over from IVF procedures will be
another’s life, especially in such a systematic destroyed. Some parents change their mind
manner. and decide to implant the embryos to give
them a chance at survival. Increasingly, infer- parents’ possible future use. Encouraging em-
tile couples are adopting embryos that would bryo adoption will simply lessen the number of
otherwise be destroyed or languish in cryo- embryos that remain indefinitely suspended in
preservation. Even if these embryos would be frozen storage, and further allow loving fami-
destroyed, it does not give us the right to use lies to bear and raise children.
them for research material.
Myth: Now that the federal government has
Myth: You cannot compare a clump of cells passed GINA, patients are fully protected.
smaller than the tip of pencil to an existing hu- Fact: GINA does not cover everyone. For
man being who is suffering and may die with- example, GINA does not cover members of
out this research. the military. In addition, GINA only pertains
Fact: It is not your size or location that gives to employers and health insurers. It does not
you value and dignity; rather, it is your status prohibit discrimination by life, disability, or
as a member of the human race. Every human long-term care insurers. Furthermore, GINA
being, whether as small as the tip of a pencil or is only a minimum standard of protection that
as large as a sumo wrestler, deserves the pro- must be met in all states. States are free to pass
tections accorded to all other human beings. If laws providing more protection and more re-
we decide that some members of the human strictions on the use of genetic information by
race should not receive those protections, then insurers and others.
we are all at risk if the rich, powerful, or a sim-
ple majority decides some of us are no longer Myth: Americans who possess certain genetic
worthy of life. traits are already protected under the “Ameri-
cans with Disabilities Act” (ADA).
Myth: Adult stem cells are not as capable as Fact: While it is true that the ADA prohib-
embryonic stem cells. its employers from discriminating against dis-
Fact: While it is generally agreed that embry- abled persons who are capable of performing
onic stem cells are more flexible in becoming their duties with reasonable accommodation,
different tissue types than adult stem cells, and the Equal Employment Opportunities
the idea that adult cells are not as capable as Commission (EEOC) has stated that healthy
embryonic cells for use in treatments is pure persons with genetic predispositions to a dis-
speculation. Currently, adult cells are much ease fall within the scope of the ADA, this car-
more capable of treating human beings than ries no weight with insurance companies, who
embryonic cells, which have yet to cure a sin- are not held accountable to the EEOC in their
gle disease. decisions of who and who not to insure. Thus,
GINA and state laws are necessary to protect
Myth: Promoting embryo adoption will limit individuals from such discrimination on the
the availability of embryos for research and part of insurance companies.
will therefore prevent us from discovering im-
portant cures for debilitating diseases. Myth: My state adequately protects me against
Fact: The vast majority of embryos in storage genetic discrimination.
(over 80 percent) are reserved for the genetic Fact: While at least 40 states and the District
Endnotes
1
Michael J. Schlambott et. al., Derivation of pluripotent stem
cells from cultured human primordial germ cells, Proc. Nat’l
Acad. Sci. USA 95:23, 13726-731 (1998).
2
See M. J. Evans & M. H. Kaufman, Establishment in culture
of pluripotential cells from mouse embryos, Nature 292, 154–56
(1981).
3
See David Prentice, Under the Microscope: A Scientific Look at
Cloning, Family Policy 15:3. See also Wesley J. Smith, Lessons
From the Cloning Debate: The Need for a Secular Approach,
in Human Dignity in the Biotech Century 194-96 (Charles W.
Colson & Nigel M. de S. Cameron, eds. 2004) (explaining that
it is not physiologically possible to obtain enough eggs to treat
disease through stem cell research and human cloning).
4
President’s Council on Bioethics, Reproduction & Responsibil-
ity (March 2004).
5
Id. at 51.
6
Genetic & Public Policy Center of Johns Hopkins University,
Genetic Privacy & Discrimination (updated March 2009), avail-
able at http://www.dnapolicy.org/policy.privacy.php (last visited
July 17, 2009).
7
National Human Genome Research Institute, Genetic Discrimi-
nation Fact Sheet: Genetic Information Nondiscrimination Law
of 2008 (updated January 9, 2009), available at http://www.ge-
nome.gov/10002328 (last visited July 17, 2009).
8
Id.
9
National Human Genome Research Institute, Frequently Asked
Questions About Genetic Testing (February 5, 2009), available at
http://www.genome.gov/19516567 (last visited July 17, 2009).
10
National Human Genome Research Institute, Genetic Dis-
crimination Fact Sheet: Genetic Information Nondiscrimination
Law of 2008, supra.
Seven states ban cloning for any purpose, including both cloning-to-produce-children
and cloning-for-biomedical-research: AR, IN, MI, ND, OK, SD, and VA.
Five states have no specific law on human cloning, but have other statutes that either
expressly or implicitly ban destructive human embryo research on IVF-created
embryos and possibly on cloned human embryos: LA, ME, MN, NM, and PA.
One state permits destructive experimentation on both cloned human embryos and
cloned human fetuses up to live birth: NJ.
Seven states use state tax dollars to fund destructive human embryo research:
CA, CT, IL, MD, MA, NJ, and WI.
Six states restrict funding or use of state facilities for human cloning and/or
destructive human embryo research: AZ, IN, KS, LA, MN, and NE.
One state restricts funding for human cloning and/or destructive embryo research
and prohibits loans for entities conducting destructive human embryo research,
but also allows tax incentives for destructive human embryo research by providing
that research equipment is not taxed: VA
At least 16 states promote or encourage the use of umbilical cord cells and/or
other forms of adult stem cells for research: AZ, CO, FL, GA, MD, MA, MO, NE,
NJ, NM, NY, NC, OK, TN, TX, and VA.
Nineteen states continue to ban so-called fetal experimentation (however, four federal
courts have invalidated other states’ fetal experimentation laws): FL, KY, LA, ME,
MA, MN, MT, NE, NM, ND, OH, OK, PA, RI, SD, TN, TX, UT, and WY.
Only one state comprehensively regulates ART/IVF and facilities performing such
procedures: PA
At least five states regulate the donation and/or transfer of human sperm, human
eggs, or pre-embryos: CA, FL, ID, NY, and OK
Four states require some form of informed consent or impose specific contractual
requirements for ART/IVF: AR, CT, MA, and VA
At least five states regulate the types of healthcare providers that can perform
ART/IVF: AR, CT, ID, NH, and OR
Only one state by law defines an embryo conceived through ART/IVF as a “juridical
(or legal) person”: LA
Two states regulate the use and treatment of gametes, neonates, embryos, or fetuses:
MI and SD
Four states have laws in effect providing some general guidance for embryo
donation: CA, OH, OK, and TX.
Three states have laws in effect providing some general guidance for embryo
donation and allow for embryo adoption: FL, GA, and LA.
Embryo Adoption
Genetic Discrimination