DEFENdING LIFE 2013

BIOETHICS & BIOT E C H N O L O G I E S

Excerpt from

BIOETHICS

B I O E T H I C S & B I OTECHNOLOGIES

With each passing year, we face new and increasingly complex challenges to the sanctity of human life. Medical research and new biotechnologies are advancing far faster than our societys ethical and legal constraints ensuring their moral use. When Aldous Huxley wrote Brave New World in 1932, human cloning was merely science fiction. Today, human cloning is becoming a reality. We have seen extraordinary advances in medical research over the past 20 years. The once languishing area of stem-cell research is now commonplace. Every day, new treatments developed from adult stem cells are being used to treat real people suffering from once incurable diseases and serious injuries. Others, while not cured, have made such progress that their illnesses or injuries no longer dominate their everyday lives, and they engage in life in ways they never thought possible. Scientists have been able to help patients suffering from over 70 different diseases and injuries including brain cancer, leukemia, lymphoma, Crohns disease, lupus, heart damage, Parkinsons disease, sickle cell anemia, and end-stage bladder diseaseusing adult stem cells. Conversely, morally problematic embryonic stem-cell research has yielded no cures or treatments. Despite the promising advances in adult stem-cell research, many scientists and politicians continue to seek unfettered freedom (and your tax dollars) for immoral uses of biotechnology in the hope of miracle cures. If we do not act with greater urgency, the abuse of nascent human life will become more entrenched

and far more difficult to regulate. Powerful ethical and legal limits are needed to preserve and protect the sanctity of all human life. AUL has focused on providing accurate and up-todate information on legal advances in biotechnology, including human cloning , destructive embryo research (DER), and ethical alternatives to DER such as adult stem cells, induced pluripotent stem cells, and cord blood, as found in this section. Moreover, we hope to spark a thoughtful discussion and debate on the regulation of assisted reproductive technologies (ART), including in vitro fertilization (IVF). Women undergoing IVF should be given information regarding the practical limitations on the number of embryos that may be created and implanted during an IVF treatment cycle. Embryo adoption should be given as an option to parents of IVF-created embryos, and such adoption should be recognized under state law. We must provide meaningful oversight and regulation of IVF and other reproductive technologies, as the so-called leftover embryos in IVF clinics around the nation are at the heart of ongoing debates over DER and human cloning.

Americans United for Life, Defending Life 2013

BIOETHICS

The Brave New World of Bioethics

A SURVEY OF FEDERAL AND STATE LAWS
Mailee R. Smith, Staff Counsel, Americans United for Life Continuing advances in biomedical science and technology are raising challenging and profound ethical questionsfor individuals and families, for scientists and healthcare professionals, and for the broader society. Many important human values are implicated, among them health, the relief of suffering, respect for life and for the human person, human freedom, and human dignity. The flourishing field of modern bioethics arose to explore these issues, and various bodiesincluding the U.S. Congress, state legislatures, local research review boards, academic bioethics institutes, and several national commissionscontinue to wrestle with them. The term bioethics commonly refers to the moral questions and implications raised by biological discoveries and biomedical advances, and particularly those questions raised by experimentation on living human beings. As such, the field covers a variety of scientific and medical areas, including destructive embryo research, cloning, assisted reproduction, and genetic testingareas lacking significant protective regulation under either federal or state law. Scientists have been conducting research on mouse embryonic stem cells for 30 years and are still unable to cure mice.2 Research on humans that necessitates destroying human embryos would be repugnant even if it led to cures, but such research on humans is even more offensive given the fact that this research has rarely (and never consistently) worked in animals. There are successful, ethical alternatives to using human embryos as a source of stem cells for research and therapeutic purposes. One important source is umbilical cord blooda very rich source of stem cells. Another is adult stem cells from various organs. Researchers have long known, for example, that bone marrow can form into blood cells. We now know that bone-marrow cells can form into fat, cartilage, and bone tissue. A third promising source is neural stem cells. These stem cells have been successfully isolated and cultured from living human neural tissue and even from adult cadavers. Moreover, research breakthroughs since 2007 are opening the door for the reprogramming of adult stem cells into the embryonic stem-cell statewithout the use or destruction of human embryos. Scientific research utilizing adult stem cells has yielded peer-reviewed, published evidence for treatments or cures for over 70 conditions or diseases. Thus, the future of human cures is not in destroying some humans to treat others. It is in ethical treatments that treat all human life with dignity and respect. However, proponents of embryonic stem-cell research have purposely created a false impression that embryonic stem cells have a proven therapeutic use, when they have, in reality, never helped a single human patient. In addition to the facts that 1) obtaining embryonic stem cells destroys the subject human embryo, and 2) embryonic stem-cell research has never helped a human patient, such research is also immoral because the only way to obtain the human eggs necessary to create embryos is to exploit women. Women

I ss U es
Destructive Embryo Research (DER) Obtaining embryonic stem cells from an embryo requires the destruction of that living human being. In this process, a days-old embryo that has grown to several hundred-cells is broken apart, and the cells from the embryos inner mass are removed. 1 These unspecialized cells are then grown in the laboratory and used for research. More than a decade after the first isolation of embryonic stem cells, there is not a single disease that these cells have been used to cure, regardless of whether the cells obtained from embryos are created through sperm and egg or through cloning.

Americans United for Life, Defending Life 2013

BIOETHICS

between the ages of 18 and 25 typically produce the healthiest and most scientifically useful efficient eggs and are highly sought after as egg donors. A woman normally only produces one or two eggs per reproductive cycle. To obtain enough eggs for research, a woman must take drugs that will cause her to super-ovulate, releasing 10-15 eggs at a time, and undergo an invasive surgical procedure in order to retrieve them. It is simply not possible to obtain enough eggs from willing women to adequately pursue this research or treat possible diseases that may come from any breakthroughs using embryonic stem cells. Moreover, egg harvesting carries risks; it requires preliminary hormone treatment that is accompanied by an increased risk of certain cancers and complications in future pregnancies. 3 Putting womens health and fertilityand perhaps even their livesat stake for their eggs is nothing short of exploitation. The U.S. Supreme Court has never ruled on the legal status of a human embryo outside of the mothers womb. In August 2001, President George W. Bush announced that federal funding would be allowed only for research on then-existing embryonic stemcell lines. Later, in March 2009, President Barack Obama signed an Executive Order reversing that policy. President Obamas decision to fund such destructive researchwhich runs counter to federal law under the Dickey-Weber amendment that prohibits research that will harm an embryo was immediately challenged in federal court. Unfortunately, a district and appellate court have upheld the funding. The U.S. Supreme Court has been asked to review the case. At this point, the best strategy is for states to institute protective measures. Currently, at least seven states either expressly or impliedly ban destructive embryo research on embryos created through in vitro fertilization (IVF) or by cloning, and at least 19 states ban fetal experimentation to varying degrees. In addition to these direct bans on research, at least six states restrict funding or the use of state facilities or tax credits for destructive embryo research, and at least 29 states have passed legislation encouraging the use of adult stem cells or umbilical cord blood and/or the donation of umbilical cord blood.

AUL has drafted several models to help states curb ineffective, unethical research, and to promote proven, ethical research. These models include the Destructive Embryo Research Act, banning destructive embryo research; a Prohibition on Public Funding of Human Cloning and Destructive Embryo Research Act; an Egg Donor Protection Act, focused on preventing the exploitation of women; and a Real Hope for Patients Act, focused on promoting and funding ethical research alternatives. Human Cloning One of the inherent problems in using embryonic stem cells in therapies is the problem of transplantation. If a transplanted cells DNA is even somewhat different from the DNA of the person being treated, the body usually sees those cells as invaders and kills them offmuch like what happens when whole-organ transplants are rejected because of the recipients immune system response. Without the use of drugs to suppress the patients immune system, transplanted tissue generally survives only a few hours or days.
THE dIFFERING JUStIFICAtIONS tHAt ONE ClONE IS dEStINEd tO BE dEStROYEd FOR ItS StEM CEllS ANd tHE OtHER FOR IMPlANtAtION IN A WOMB dO NOtANd CANNOtCHANGE tHE BASIC SCIENtIFIC FACt tHAt tHE ClONEd HUMAN EMBRYOS CREAtEd FOR tHERAPEUtIC OR REPROdUCtIVE PURPOSES ARE HUMAN BEINGS.

To overcome this inherent problem, scientists began pursuing human cloning as a method for obtaining genetically-compatible cells for transplantation. Human cloning is the process through which a human egg is taken from a woman, the nucleus is removed, and then it is replaced with a nucleus from a patients body cell. Using electrical shock or chemical bath, the egg is tricked into believing it has been fertilized, and it begins to divide, thereby becoming a human embryo. A general misconception exists that there are two types of human cloning: therapeutic cloning (or

Americans United for Life, Defending Life 2013

BIOETHICS

cloning-for-biomedical-research) and reproductive cloning (or cloning-to-produce-children). However, in both situations, the clones are created from the same procedure. These designations are simply descriptions of the two different rationales or purposes offered for the clones created from the same procedure, known medically as somatic cell nuclear transfer, or human cloning. Both rationales are morally wrong because both scientifically begin with the creation of a cloned human being at the embryonic stage of life. The differing justifications that one clone is destined to be destroyed for its stem cells and the other for implantation in a womb do notand cannot change the basic scientific fact that the cloned human embryos created for therapeutic or reproductive purposes are human beings. For this reason and others, comprehensive bans on human cloning should be enacted in the 50 states and by the U.S. Congress. Currently, no federal law bans human cloning for any purpose, and the U.S. Supreme Court has not yet spoken on the subject. However, eight states ban human cloning for any purpose, while ten states ban only cloning-to-produce-children. AUL has drafted a Human Cloning Prohibition Act to assist states seeking to ban human cloning for all purposes. And as previously mentioned, we have also drafted a model bill prohibiting the public funding of such unethical research and another preventing the exploitation of women providing human eggs. Assisted Reproductive Technologies (ART) In vitro fertilization (IVF) is the fertilization of a human egg by a human sperm outside a womans body, in a laboratory. The term assisted reproductive technology (ART) encompasses both IVF as well as newer forms of ART. Despite the increasingly widespread use of these reproductive technologies, there is a lack of commonsense regulation of these procedures at both the federal and state levels. This lack of regulation has resulted in the storage of more than an estimated 600,000 cryopreserved (frozen) human embryos in laboratories across the United States.

In 2004, the Presidents Council on Bioethics issued a report, Reproduction & Responsibility, outlining the lack of regulation of ART. As the Councils report points out, [t]here is only one federal statute that aims at the regulation of assisted reproduction: the Fertility Clinic Success Rate and Certification Act of 1992 (sometimes called the Wyden Act), and it only serves two purposes: 1) providing consumers with information about the effectiveness of ART services, and 2) providing states with a model certification process for embryo laboratories.4 Additionally, the Clinic Laboratory Improvement Amendments of 1988 (CLIA) govern quality assurance and control in clinical laboratories including those involved in ART, and the U.S. Centers for Disease Control and Prevention (CDC) has announced a new national ART Surveillance System. These regulations pale in comparison to those in place in Great Britain, Germany, Sweden, Switzerland, and many other European nations, where, for example, the number of embryos created and/or transferred per reproductive cycle is limited by law. The Councils March 2004 report further confirmed that ART is little regulated by the states. In fact, as the report noted, [t]he vast majority of state statutes directly concerned with assisted reproduction are concerned mostly with the question of access to such services.5 For example, numerous states only address insurance coverage of ART. Responsible state and federal regulation is necessary for several reasons: Assisted reproductive technologies, primarily IVF, are the gateway to all future genetic engineering. The current lack of regulation promotes the creation and destruction of excess embryos and, without an adequate response, promotes conditions conducive for human cloning and other immoral experimentation on human life in its earliest forms. The health of women undergoing IVF, who are often injected with hormones that may cause cancer and other diseases, may be compromised, and subsequently-born children may suffer birth defects or other complications from the procedures.6

Americans United for Life, Defending Life 2013

BIOETHICS

There are increasing numbers of multiple births (with associated health and safety concerns), as well as the use of so-called selective reductions (i.e., abortions) of unborn children.7 AUL has drafted model legislation, entitled the Assisted Reproductive Technology Disclosure and Risk Reduction Act, aimed at ensuring truly informed consent by couples undergoing ART processes as well as regulating the number of embryos that can be created and transferred in a single reproductive cycle. Embryo Adoption The lack of ART regulation has left hundreds of thousands of embryos frozen in time. But through embryo adoption, couples can adopt so-called leftover embryos from other couples who have already undergone IVF. This process represents an emerging alternative to the traditional options left to IVF parents: indefinite cryopreservation, donation to anonymous persons, or donation for research (and ultimately, destruction). Not only does embryo adoption allow parents to choose an alternative other than destruction for research, but it also offers a more attractive option than donation. When the embryos are donated to other couples, as opposed to adopted by them, the process is anonymous and the placement is usually determined by the fertility clinics physician. Receiving couples usually undergo only basic medical screening and psychological counseling. When embryos are adopted, on the other hand, the process is typically much more open. The adopting family will likely have access to the childs history, a potential match for future organ donation, and the possibility of a relationship with the placing family. Programs such as the Snowflake Embryo Adoption Program require adopting couples to undergo extensive screening, such as fingerprinting, background checks, home studies, infant CPR, and parenting classes. Placing-families and adoptivefamilies prepare informational portfolios about themselvesdossiers including everything from photographs to information regarding religious backgrounds. Like birth mothers, genetic parents use

this information to choose adoptive parents to bear and raise their embryos. Currently, however, embryos are usually stranded in a sort of legal nowhere-land. Many courts are reluctant to classify embryos as property, but they also do not characterize them as human beings. Laws regarding embryo donation and adoption are, at best, unsettled. There are no federal laws which specifically address these issues, but at least 13 states provide varying levels of guidance for embryo donation and/or embryo adoption. AUL has crafted a model bill, entitled the Embryo Adoption Act, for states interested in explicitly allowing for a court order of adoption for frozen embryos. Genetic Testing and Discrimination Genetic testing is currently available for 1,200 diseases, and tests for hundreds of others are being developed.8 But, as with other areas of biotechnological success, ethical questions have arisen with the advancement of genetic testing. For example, can health insurance companies use the results of genetic testing in granting or denying coverage? Or can employers screen the genetic information of potential employees before making hiring or promotion decisions? Denying health insurance coverage on the basis of genetic disease is not new. In the 1970s, some insurance companies denied coverage or charged higher premiums to African Americans who carried the sickle cell anemia gene. More recently, young children were denied health insurance because they carried a recessive genetic disease. In another example, the health insurance coverage of a young boy with Fragile X Syndrome (an inherited form of mental retardation) was dropped; the company claimed the syndrome was a pre-existing condition. On the employment front, workers for Burlington Northern Santa Fe Railroad were tested for genetic predisposition to carpal tunnel syndrome. In 2008, Congress took an initial step toward protecting patients against such discrimination by passing the Genetic Information Nondiscrimination Act (GINA).9 GINA prohibits employers and health

Americans United for Life, Defending Life 2013

BIOETHICS

insurers from discriminating against persons on the basis of their genetic information. This is only an initial step. GINA only protects against discrimination by employers and health insurersit does not prohibit discrimination by life, disability, or long-term care insurers. The issue of coverage remains alive even under the Affordable Care Act (ACA or Obamacare), as GINA is limited to only certain insurers and it remains to be seen how Obamacare is implemented in the states. Further, no current federal law or U.S. Supreme Court precedent addresses the issue of prenatal testing and the proper use of the results of genetic testing performed on the unborn. Therefore, it is up to the states to ensure that their citizens are not discriminated against by health, life, disability, and long-term care insurers.

Some states already address prenatal testing in one way or anothereither by affirming life or by encouraging abortion (whether intentionally or not). While most states and the District of Columbia encourage life by prohibiting discrimination by insurance companies, some states effectively encourage the abortion of children with birth defects through the use of prenatal testing. For example, the California Department of Health maintains a Prenatal Screening Branch that is focused on detecting birth defects during pregnancy and identifying individuals who are at increased risk of carrying a fetus with a birth defect.10

Americans United for Life, Defending Life 2013

BIOETHICS

Key Te r m s
AdUlt StEM CEllS are semi-specialized cells that create the end-stage cells that do the work of the body. Present throughout life, they continually work to replace dying end-stage cells. There are no ethical dilemmas associated with using these cells as there are with embryonic stem cells. Sometimes referred to as multipotent stem cells, more than 70 different diseases or conditions have been treated or cured with these cells. ClONING is the creation, by whatever technique, of an entity genetically identical to another entity already in existence. Through cloning, the new entity has only one genetic parent, not two as in normal reproduction. ClONING-FOR-BIOMEdICAl-RESEARCH is the creation through cloning of a new human being at the embryonic stage of life genetically identical to a single parent, with the intention of harvesting the clones stem cells for experimentation, thereby resulting in the destruction of the cloned human being. ClONING-tO-PROdUCE-CHIldREN is the creation through cloning of a new human being at the embryonic stage of life genetically identical to a single parent, with the intention that the cloned human being will be implanted in a womb and born. CORd BlOOd StEM CEll is an adult stem cell found in the umbilical cord blood of newborn infants. Umbilical cords, which are routinely discarded, were discovered to have an unusually high concentration of adult stem cells which are very easy to obtain and are capable of treating a host of diseases. In 2005, Congress passed legislation creating a national umbilical cord blood bank similar to the national bone marrow system. EMBRYO is an entity that, through whatever means (normal reproduction, cloning, or other method), has a full complement of DNA and, with the proper environment and nutrition and unless otherwise interrupted, will develop along the natural course of progression for that species into further stages of development until death. EMBRYONIC StEM CEll is an early-stage stem cell obtained by destroying an embryo. Embryonic stem cells can become virtually any type of cell in the body, but only if properly directed in their development. This naturally happens in the organized human embryo, but is something that scientists have yet to learn how to control. The primary ethical issues associated with using these cells is that they currently require the destruction of a living human embryo, and that use of such cells in medical research constitutes unethical experimentation when there has not been adequate research using animals. Sometimes referred to as pluripotent stem cells, there is not a single disease that physicians can treat with these cells. GENEtIC dISCRIMINAtION IS dISCRIMINAtION which occurs if people are treated unfairly because of differences in their DNA that increase their chances of getting a certain disease. For example, a health insurer might refuse to give coverage to a woman who has a DNA difference that raises her odds of getting breast cancer. Employers also could use DNA information to decide whether to hire or fire workers.11 GENEtIC tEStING IS tEStING developed to find DNA differences that affect our health.12 In other words, these are tests which look for alterations in a persons genes or changes in the level or structure of key proteins coded for by specific genes.13 It is believed that healthcare providers will be able to utilize information about each persons DNA to develop more individualized ways of detecting, treating, and preventing disease.14

Americans United for Life, Defending Life 2013

BIOETHICS
SOMAtIC CEll NUClEAR tRANSFER (SCNT) is another term for cloning. It is the process in which the nucleus (and, therefore, the original DNA) is removed from an egg and discarded, the nucleus of a somatic (or body) cell containing the genetic material of another entity is transplanted into the egg, and an electric shock or chemical solution is used to trick the egg into believing it has been fertilized. The altered egg, containing another entitys DNA, begins dividing as does every other embryo. ZYGOtE is a one-cell embryo. From this one cell will arise every cell in the body. Sometimes inaccurately referred to as a fertilized egg or totipotent cell.

Americans United for Life, Defending Life 2013

BIOETHICS

M y t h s a n d Fa c t s
Myth: Embryonic stem-cell researchers are close to finding cures for a host of terrible diseases, like cancer, diabetes, and neurological disorders such as Parkinsons.

Fact: Embryonic stem cells are unable to cure anyone of anything. In fact, the first company to receive government approval for human clinical trials using human embryonic stem cellsGeron Corp. announced in 2011 that it was discontinuing further development of its stem programs.15 Instead, use of the cells in humans can do great harm (for example, use of embryonic stem cells has led to tumor formation in some animal experiments). Adult stem-cell research is helping cure or treat more than 70 diseases, with more work being prepared for or currently in clinical trials.
Myth: Embryonic stem-cell research, including the destruction of embryos for their parts, is morally and ethically acceptable.

Fact: Even if breakthroughs using embryonic stem cells do occur, it is still unethical to destroy human embryos for their parts. Regardless of the perceived or real benefit of destroying human embryos, there is no ethical justification for destroying nascent human life regardless of its origins. It is never right to intentionally develop and kill innocent human life to save anothers life, especially in such a systematic manner.
Myth: Cloned human embryos are not really human.

Fact: This would mean that Dolly, the first mammal clone ever, was not a sheep, despite the fact she was created using a sheep egg and sheep DNA and after birth looked and acted like a sheep. If cloned human embryos are not human, then what are they? The only logical answer is that a cloned human embryo is fully human.
Myth: We do not owe a right to life to cloned embryos. They are an unnatural aberration.

Fact: Regardless of the ethical issues surrounding the creation of human clones or why a clone was created, if created, it should not be forbidden to live. Laws against creating cloned embryos should not require the clones destruction.
Myth: A ban on destructive human embryo research or human cloning will stifle scientific research or economic development.

Fact: Few companies even do this research, in part because there are no foreseeable cures that will recoup the money needed for investment. And if embryonic stem-cell research does not produce cures, companies may not survive long enough to produce any benefit.
Myth: Embryos left over from in vitro fertilization (IVF) procedures are just going to die anyway. We should get some benefit from them.

Fact: That is unpersuasiveevery human being (embryo or adult) eventually dies; that does not mean we can kill it. Further, it is not necessarily the case that embryos left over from IVF procedures will be destroyed. Some parents change their mind and decide to implant the embryos to give them a chance at survival. Increasingly, infertile couples are adopting embryos that would otherwise be destroyed or languish in cryopreservation.

Americans United for Life, Defending Life 2013

BIOETHICS Myth: You cannot compare a clump of cells smaller than the tip of pencil to an existing human being who is suffering and may die without this research.

Fact: It is not your size or location that gives you value and dignity; rather it is your status as a member of the human race. Every human being, whether as small as the tip of a pencil or as large as a sumo wrestler, deserves the protections accorded to all other human beings. If we decide that some members of the human race should not receive those protections, then we are all at risk if the rich, powerful, or a simple majority decides some of us are no longer worthy of life.
Myth: Adult stem cells are not as capable as embryonic stem cells.

Fact: While it is generally agreed that embryonic stem cells are more flexible in becoming different tissue types than adult stem cells, the idea that adult cells are not as capable as embryonic cells for use in treatments is pure speculation. Currently, adult cells are much more capable of treating human beings than embryonic cells, which have yet to cure a single disease.
Myth: Promoting embryo adoption will limit the availability of embryos for research and will, therefore, prevent us from discovering important cures for debilitating diseases.

Fact: The vast majority of embryos in storage are reserved for the genetic parents possible future use (i.e., if they decide to give birth to another child). Encouraging embryo adoption will simply lessen the number of embryos that remain indefinitely suspended in frozen storage, and further allow loving families with fertility problems to bear and raise children.
Myth: Now that the federal government has passed GINA, patients are fully protected.

Fact: GINA does not cover everyone. For example, GINA does not cover members of the military. In addition, GINA only applies to employers and health insurers. It does not prohibit discrimination by life, disability, or long-term care insurers. Furthermore, GINA is only a minimum standard of protection that must be met in all states. States are free to pass laws providing more restrictions on the use of genetic information by insurers and others.
Myth: Americans who possess certain genetic traits are already protected under the Americans with Disabilities Act (ADA).

Fact: While it is true that the ADA prohibits employers from discriminating against disabled persons who are capable of performing their duties with reasonable accommodation, and the Equal Employment Opportunities Commission (EEOC) has stated that healthy persons with genetic predispositions to a disease fall within the scope of the ADA, this carries no weight with insurance companies, who are not held accountable to the EEOC in their decisions of who and who not to insure. Thus, GINA and state laws are necessary to protect individuals from such discrimination on the part of insurance companies.
Myth: My state adequately protects me against genetic discrimination.

Fact: While the majority of states and the District of Columbia prohibit discrimination in health insurance policies based upon genetic testing, the extent of the protection differs. For example, some states specifically prohibit health insurers from requiring testing, while others allow health insurers to consider the results of tests only if the patients voluntarily submit favorable results. On the other hand, some states actually encourage genetic testing or allow discrimination in certain types of health insurance policies. Thus, states are encouraged to enact further restrictions limiting the use of genetic information by all insurance companies.

Americans United for Life, Defending Life 2013

BIOETHICS

E n D notes
1. 2. 3. M.J. Schlambott et. al., Derivation of pluripotent stem cells from cultured human primordial germ cells, Proc. Natl Acad. Sci. USA 95:23, 13726-731 (1998). See M.J. Evans & M.H. Kaufman, Establishment in culture of pluripotential cells from mouse embryos, Nature 292, 15456 (1981). See, e.g., W.J. Smith, Lessons From the Cloning Debate: The Need for a Secular Approach, in Human Dignity in the Biotech Century 194-96 (C.W. Colson & N.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). Presidents Council on Bioethics, Reproduction & Responsibility (Mar. 2004). Id. at 51. See, e.g., The Presidents Council on Bioethics, Reproduction & Responsibility: The Regulation of New Biotechnologies 37-43 (2004). See, e.g., id. at 41, 43. Genetic & Public Policy Center of Johns Hopkins University, Genetic Privacy & Discrimination (updated Mar. 2009), available at http:// www.dnapolicy.org/policy.privacy.php (last visited Aug. 8, 2012). Pub. L. 110-233, 122 Stat. 881 (enacted 2008).

4. 5. 6. 7. 8. 9.

10. See California Department of Public Health, Welcome to the California Prenatal Screening Program (PNS) (2010), available at http:// www.cdph.ca.gov/programs/pns/pages/default.aspx (last visited Dec. 3, 2012). 11. National Human Genome Research Institute, Genetic Information Nondiscrimination Act of 2008 (updated Feb. 18, 2012), available at http://www.genome.gov/10002328 (last visited Aug. 8, 2012). 12. Id. 13. National Human Genome Research Institute, Frequently Asked Questions About Genetic Testing (updated Feb. 18, 2012), available at http://www.genome.gov/19516567 (last visited Aug. 8, 2012). 14. National Human Genome Research Institute, Genetic Information Nondiscrimination Act of 2008, supra. 15. See Geron Corp., Geron to Focus on its Novel Cancer Programs (Nov. 14, 2011), available at http://ir.geron.com/phoenix. zhtml?c=67323&p=irol-newsArticle&ID=1635764&highlight= (last visited Dec. 3, 2012).

Americans United for Life, Defending Life 2013

BIOETHICS

Laws Related to Destructive Embryo Research

At least seVen stAtes either expressly or implicitly ban destructive human embryo research on IVF-created embryos and/or cloned human embryos: AZ, IN, LA, ME, OK, PA, and SD At least nine stAtes expressly or implicitly permit destructive experimentation on IVF-created embryos: CA, CT, IL, IA, MD, MA, MO, MI, and NJ.

Americans United for Life, Defending Life 2013

BIOETHICS

Laws Related to Human Cloning

Eight stAtes ban cloning for any purpose, including both cloning-to-produce-children and cloning-for-biomedical-research: AZ, AR, IN, MI, ND, OK, SD, and VA. Ten stAtes allow human cloning for destructive embryo research (cloning-for-biomedicalresearch), but prohibit attempting to bring a cloned child to term (cloning-to-produce-children): CA, CT, IL, IA, MD, MA, MO, MT, NJ, and RI.

Americans United for Life, Defending Life 2013

BIOETHICS

Funding of Cloning and Stem Cell Research

At least eight stAtes use or statutorily allow the use of state tax dollars to fund human cloning and/or destructive human embryo research: CA, CT, IL, MD, MA, NJ, NY, and WI. At least siX stAtes restrict the funding or use of state facilities or tax credits for human cloning and/or destructive human embryo research: AZ, IN, KS, LA, NE, and VA.

Americans United for Life, Defending Life 2013

BIOETHICS

Egg Harvesting

At least eight stAtes have laws or regulations related to the purchase, donation, transfer, solicitation, and/or harvesting of human eggs: AZ, CA, CT, FL, IN, MD, MA, and NY.

Americans United for Life, Defending Life 2013

BIOETHICS

Ethical Alternatives to Human Cloning Research

At least 29 stAtes promote or encourage the use of umbilical cord cells and/or other forms of adult stem cells for research: AZ, AR, CA, CO, CT, FL, GA, IL, IN, KS, LA, MD, MA, MI, MO, NE, NJ, NM, NC, ND, OH, OK, PA, RI, TN, TX, VA, WA, and WI.

Americans United for Life, Defending Life 2013

BIOETHICS

Other Restrictions on Cloning and Stem Cell Research

At least 19 states prohibit fetal experimentation to varying degrees: At least fiVe stAtes prohibit experimentation on aborted fetuses: IN, ND, OH, OK, and SD. At least 14 stAtes prohibit experimentation only on live and/or aborted viable fetuses: AR, FL, KY, LA, ME, MA, MI, MN, MO, MT, NE, NM, PA, and RI.

Americans United for Life, Defending Life 2013

BIOETHICS

Laws Related to Chimeras (Human-Animal Hybrids)

Two stAtes prohibit the creation of human-animal hybrids: AZ and LA.

Americans United for Life, Defending Life 2013

BIOETHICS

ART Regulations

At least 11 stAtes regulate the provision of assisted reproductive technologies, to varying degrees: AZ, CA, CT, FL, LA, MD, NH, OK, PA, WI, and VA.

Americans United for Life, Defending Life 2013

BIOETHICS

Informed Consent for ART

At least foUr stAtes require some level of informed consent before a patient undergoes assisted reproductive technologies: CA, CT, MA, and VA.

Americans United for Life, Defending Life 2013

BIOETHICS

Laws Related to Embryo Donation and Adoption

At least ten stAtes provide varying levels of guidance for embryo donation: CA, NJ, NM, ND, OH, OK, TX, UT, WA, and WY. At least three stAtes provide varying levels of guidance for embryo donation and allow for embryo adoption: FL, GA, and LA.

Americans United for Life, Defending Life 2013