The field of genetics is rapidly expanding in terms of new scientific techniques as well as new ethical challenges. Genetic analysis, diagnosis and screening have become available both earlier in life, including early in the womb or even for the embryo in the laboratory dish, and simpler such as from a drop of the mother’s blood. The development of new, more accurate gene editing techniques has raised the prospects for potential medical applications to treat genetic diseases, but also heightened concerns about designer children or genetic alterations and enhancements. CLI analyzes the genetic technologies and welcomes appropriate applications to treat disease in consenting individuals. However, CLI has advocated for responsible application of genetic screening and engineering, so that the science is not abused for eugenic or life-destroying ends.

Q&A with the Scholars: Science, Ethics, and Fetal Tissue

Tara Sander Lee, Ph.D.  

Tara Sander Lee, Ph.D., is a Molecular and Cell Biologist with over 15 years of experience in academic research and healthcare. In this interview, she discusses genetic testing for diagnosis and treatment of children and the ethical and scientific issues surrounding the use of fetal tissue procured from abortion for research.

Q&A with the Scholars: Down Syndrome and Prenatal Testing

Charlotte Lozier Institute  

I believe that the decision to abort is responsible for far more sadness and family difficulties than the acceptance of a child with Down syndrome who truly does bring a family’s capacity for love to a whole new level.

CLI Comment on NIH Proposal to Fund Human-Animal Chimeras

David Prentice, Ph.D.  

The U.S. National Institutes of Health (NIH) has proposed lifting a ban on approval and funding for the creation of human-animal chimeras. CLI submitted detailed comments regarding the science and ethics of such research, opposing the NIH proposal and noting ethical and scientifically valid alternatives exist to satisfy scientific demands.

Nature Journal on Embryo Gene Manipulation: “It’s Time to Give Patients a Voice”

Genevieve Plaster, M.A.  

As the international debate continues on the use of CRISPR gene-manipulating technology on human embryos, Nature journal this week gave serious consideration to concerns about its societal consequences. In a news feature entitled, “Should you edit your child’s genes?” author Erika Check Hayden takes a refreshingly humane approach by asking people with disabilities what they think of the real-life prospect of “editing out” genes responsible for disability before a person is even born.

“3-Parent Embryos” and “Gene-Edited Babies”: A Visual Aid

David Prentice, Ph.D.  

As both international and national debates continue over the ethics and science of “three-parent embryos” and “genetically modified embryos”, Dr. David A. Prentice, Ph.D. of the Charlotte Lozier Institute has prepared a series of visual primers for the general public, illustrating the various methods by which germline genetic engineering is used to create genetically modified human embryos.

Fact Sheet: Responses Regarding Poor Prenatal Diagnosis

Charlotte Lozier Institute  

This fact sheet outlines the various responses to a “poor prenatal diagnosis” for a fetal abnormality, noting especially recent medical advances well as the life-affirming option for perinatal hospice.

North Carolina Eugenics Victims Still Seeking Justice due to Compensation Technicality

Genevieve Plaster, M.A.  

Debra Blackmon was 13 years old when two social workers visited her home in North Carolina, assessed her to be “severely retarded,” and put in motion the process for her sterilization. The year was 1972. Though the state passed a law in 2013 to compensate victims of involuntary sterilization under the North Carolina Eugenics Board, Blackmon was denied because her paperwork stated that she was sterilized under county authority – not state authority, a technicality written into the law.

Brave New Britain: The U.K. Approves Production of Three-Parent Embryos

David Prentice, Ph.D.  

The concept of “designer babies” may sound like science fiction, a literal Brave New World, but it is decidedly not fictional – it is here now and being pushed rapidly into fertility clinics.

After only a brief debate today in the House of Commons, British Members of Parliament (MPs) approved a proposal to create genetically-engineered babies who contain the DNA of three parents: two mums and a dad. The vote to approve wasn’t even close – 382 ayes to 128 noes.

Ohio Passes Down Syndrome Bill Requiring Healthcare Professionals to Provide Support Information to Parents

Genevieve Plaster, M.A.  

On December 19, Ohio passed the Down Syndrome Information Act, which requires medical professionals to distribute up-to-date, evidence-based information on Down syndrome to parents who receive the diagnosis, either prenatally or after birth, that their child has Down syndrome (DS). Included in the required material is contact information for support organizations and local resources available to the parents. The Down Syndrome Information Act (Sub. HB 552), sponsored by Rep. Peter Stautberg, was signed into law along with 39 other pieces of legislation by Governor John Kasich last Friday. The bill passed the House and Senate both times with no opposing votes this November and mid-December.

Non-invasive Prenatal Screening Expands Disability Discrimination Abortion

Nora Sullivan, M.P.A  

A recent report on prenatal genetic screening from the New England Center for Investigative Reporting has caused quite a stir. The report showed significant inaccuracies in non-invasive (i.e., using blood tests and not invasive means such as chorionic villus sampling and amniocentesis) prenatal screening and told the stories of a number of women who chose to terminate based on these inaccurate test results. The report, which is the result of a three-month investigation by the group, found that prenatal testing companies are overselling the accuracy of their screening tests and doing little to inform parents and doctors of the major risk of unreliability of these test results – a circumstance that can lead to a multitude of problems.

The United Kingdom’s Rubicon on Three-Parent Embryos

Nora Sullivan, M.P.A  

Later this month, leading scientists from around the world are set to caution a UK parliamentary inquiry against the creation of babies using the genetic material of three parents. On October 22, this group will warn the inquiry against such genetic engineering and the possible scientific and ethical problems it could bring.

Improving Joyful Lives: Society’s Response to Difference and Disability

Charlotte Lozier Institute  

This paper looks at the highly complex genetic condition that is Down syndrome and society’s response to individuals with this condition. This important paper points out that while research to improve the lives of those with Down syndrome has progressed, federal funding for it lags considerably behind that for other genetic disorders. Policy recommendations are made for the support of those with this condition and their families.

Cloning is Cloning is Cloning

Eugene C. Tarne  

This primer on cloning examines the nature and purpose of human cloning in light of recent developments in stem cell technology. The paper points out that all cloning is reproductive and reflects on the immediate outcome of human cloning – a human embryo – while examining the terminology used by cloning advocates to obscure the facts.

Eugenics Compensation Bill Offers Hope to Virginia Victims

Charlotte Lozier Institute  

When Virginian E. Lewis Reynolds was a child, he was hit on the head in a tragic accident that resulted in epileptic-like convulsions that lingered for years.  Mr. Reynolds ultimately did manage to overcome this affliction and he was able to enlist in the Marine Corps where he served in Korea and Vietnam in the […]

Victims of NC Eugenics Program to Receive Compensation At Last

Charlotte Lozier Institute  

Despite signals earlier this year that the State of North Carolina would once again not include plans compensation for the victims of the state’s infamous eugenics programs in the state’s budget, it seems that those who suffered forcible or coerced sterilization at the hands of the state will see some restitution after all as North […]

The Science and Politics of Cloning: What the News Was All About

Charlotte Lozier Institute  

In this paper, Dr. Maureen Condic of the University of Utah explains the derivation of human stem cells from cloned human embryos. Dr. Condic discuss the science and politics behind cloning and why this method is unlikely to ever be the preferred tool of regenerative medicine.

UK Government Panel Approves Genetically Engineered “Three-Parent” Embryos

Eugene C. Tarne  

Great Britain’s Human Fertilisation and Embryology Authority (HFEA), which oversees fertility treatments and embryo research in that nation, recently approved fertility procedures that would amount to the genetic engineering of children through cloning (nuclear transfer) technology and germ-line modification, resulting in a “three-parent embryo” that would have genetic material from two mothers and one father.

Possible Adult Stem Cell Therapy for Blood-Disorders in Down Syndrome

Eugene C. Tarne  

A recent study from researchers at the University of Washington announced a major step forward in the treatment of genetic diseases and specifically in treating Down syndrome patients.     Down syndrome occurs when there is an extra copy of chromosome 21 (hence its alternative name, Trisomy 21) in the individual’s genetic makeup, causing the physical and mental […]

Justice for Eugenics Victims in North Carolina

Charlotte Lozier Institute  

The state of North Carolina has now identified more than 100 victims of their massive state-sponsored eugenics program which lasted from 1929 to 1974 according to reports out recently.  In an effort to compensate for the wrongs of the past, Demoicratic Gov. Bev Perdue established the N.C. Justice for Sterilization Victims Foundation.  The foundation seeks to provide justice […]