December 2010 eNews
Designer Babies: New Science or Science Fiction?
by Harvey J. Stern, MD, PhD,
Director of Reproductive Genetics
Ever since the publication of Aldous Huxley’s Brave New World in 1932 we have been both fascinated and frightened by the possibility of altering and controlling human embryonic and fetal development to select certain highly-valued or desired traits. Many fictional novels and movie scripts have come along based in some way on the consequences of our developing the technical capability to permanently alter the genome of a developing embryo or fetus and like Huxley, these paint a bleak picture of the future of the human race with near total loss of individuality.
The birth of the first child by IVF reported by Edwards and Steptoe in 1978 led to a series of sensational articles on “test-tube” babies and the medical and moral hazards of the genetic manipulation of human development. Even today with the awarding of the Nobel Prize in Physiology or Medicine to Dr. Edwards we still see articles written about the “dark side” of IVF, allowing wealthy couples to make babies who are “faster, taller, smarter, and better looking.”
There is no doubt that our knowledge of what all those As,Ts,Gs, and Cs in the human genome mean has expanded dramatically in the last ten years along with new powerful methods to rapidly analyze DNA sequence information. Preimplantation Genetic Diagnosis (PGD) was introduced clinically in 1990 as a means to provide information on the genetic status of embryos from couples at-risk for genetic disorders such as cystic fibrosis and Duchene muscular dystrophy. PGD enabled prenatal diagnosis without having to test an ongoing, intrauterine pregnancy and considering interruption of pregnancy in cases where the fetus has a genetic disorder. These procedures, although on the cutting edge of reproductive science, are considered morally acceptable to physicians and the public alike. Other uses of PGD have raised ethical concerns, especially the potential of PGD to be used for non-medical reasons such as choosing factors that influence IQ, height, physical appearance, and athletic prowess. In the media, this process has become known as making “designer” babies. Every few months we see a new article lamenting the eventual “ordering” of children similar to the way we can “build” a new car or laptop computer.
The Washingtonian recently published a story by John Pekkanen titled “Coming Soon-Designer Babies?” in which the author claims that “Genetic innovations are prying open a Pandora’s box of issues we can scarcely comprehend.” He fears that prospective parents will be able to use this technology to select the combination of genes they want for their child. The article includes an illustration of what looks like an iPhone application where parents can select traits from among folders of sex, eyes, hair, IQ, skills, and health. The author points out the work of Dr. Jeffrey Steinberg of Los Angeles, who advertised that his PGD test would allow parents to choose their child’s eye and hair color and skin complexion.
Just how credible are these claims? Are we really that close to being able to order up our view of the perfect child? Despite all the media attention these issues receive, we are not close to being able to perform the genetic manipulation described in the article. To further discuss this, some terms will need to be clarified about “genetic selection.” The first is to clarify the difference between determining and choosing a genetic trait. PGD is a diagnostic procedure that allows physicians to determine the genetic status of an embryo for a specific area of the human genome. It only “tells you what you got” and does not imply any ability to alter the DNA (genes) of a particular embryo, which is defined as “genetic engineering.” In other words, the embryos possess the same combinations of genes that would occur by natural conception. A Chinese couple with dark hair and eyes cannot “order” a child with blue eyes and blonde hair. Those genes are not present in their genomes; something easily determined by looking at the coloration of their relatives around the table at a family dinner. At this time there are no clinically validated methods of permanently altering the DNA of an embryo after it has been fertilized. In the late 1990s, studies involving the introduction of foreign genes into a human (gene therapy) via the use of viral vectors were attempted, but halted when an experimental subject died of lung disease after infection with the virus.
PGD can be performed for many single gene disorders, such as sickle cell disease and cystic fibrosis, where the DNA alterations are thoroughly understood. In these diseases a defined alteration of the DNA causes a person to develop the disorder. Most traits in humans, however, are much more complicated and involve the action of multiple genes as well as other external (environmental) factors in what geneticists call multi-factorial inheritance. For example, body mass index (BMI) is used as a risk factor for many medical conditions. BMI is clearly affected by many genes, but also by diet, smoking history, level of exercise, etc. These interactions are extremely complex and often, we cannot separate the effect of genes from those of the environment. The vast majority of human traits including height, intelligence, and presence of congenital heart disease or psychiatric disorders are determined by multi-factorial inheritance. These traits, due to their complexity, are unlikely to be amenable to testing by PGD in embryos. It is not inconceivable that at some future time with better understanding of multi-factorial inheritance that PGD selection may be possible, however it is unlikely that this technology will be available soon. Likewise, the ability to effect a change in the genetic program of an embryo (genetic engineering) is also unlikely to be accomplished any time soon.
Realistically, the concept of designer babies will remain in the realm of science fiction for many years. This does not prevent individuals from writing about scenarios where this type of genetic manipulation could occur and calling for increased government regulation of assisted reproductive technologies. In the Washingtonian article, Pekkanen quotes experts in PGD who claim they would not use PGD for non-medical reasons such as selecting hair color. This makes it seem to the average reader that this capability is just around the corner. These concerns need to be tempered by the fact that at this time, and likely for many years to come, the technology does not exist to carry out genetic engineering in humans. It makes for good press, but the reality is that right now it is only science fiction.
Dr. Stern is the Director of Reproductive Genetics and the Fetal Diagnostic Center at GIVF. To learn more about Genetic Services at GIVF, click here.
What's New at GIVF
The Delivery Promise™ from GIVF protects your financial investment in fertility treatment. Take home your baby or receive a 100% refund of the treatment cost. Learn more here.
GIVF now offers a full service satellite office in North Bethesda, MD (across the street from White Flint Mall). Learn more about the new office here.
Male infertility consultations are available at GIVF with a board certified urologist. Schedule a consultation here.
Preserve your fertility with Personal Egg Banking™ (also known as elective oocyte cryopreservation). Schedule a free consultation here.
Robert G. Edwards: A Personal Viewpoint by GIVF Founder, Joseph D. Schulman, M.D. is now available. Dr. Schulman founded GIVF in 1984 and is a leader in the fields of assisted reproduction and medical genetics. He had the unique experience of working in the 1970s with Drs. Robert Edwards and Patrick Steptoe in England on development of the original methods of IVF. We are pleased to offer this wonderful book as a gift. For your FREE COPY, provide your shipping details by clicking here.
2011 Patient Seminars are just around the corner! Stay tuned, dates and locations will be announced in January. If you would like to be notified as soon as dates are announced, email firstname.lastname@example.org.
Coping with Infertility During the Holidays
by Phyllis Martin, LPC
Today I heard “I don’t know why but I just can’t get into the season this year! Normally I’m gung ho!” Can you relate? It happens. The holiday season is upon us and for those dealing with infertility, it can become more of a challenge during this time for many reasons. Here are the main reasons:
Patients often have internal deadlines for treatment and procedures. You may have assumed, months ago, that there would be no way you would still be dealing with medical treatments by the end of the year, yet here you are and there is a sense of disbelief. Holidays are also a time of reflection and annual review. Good times and bad times are easier to recall on the holiday anniversary. This heightens the impact of really feeling how much time has passed.
We find ourselves invited to office functions, neighborhood gatherings, and family traditions. Each present pressure to answer “when are you going to have a baby?” or have a similar conversation. Each poses potential to deal with someone else’s new baby. The bombardment of holiday cards with cute children’s pictures, child-centered religious services, and ads geared for kids all feel like salt in the wound.
Finally, there is a myth as to how we should feel during the holidays. The happiness myth heightens the less-than-happy feelings patients may be experiencing. The myth looks like a Norman Rockwell painting. It snows, you have a fireplace, everyone gets along even if they have not all year long, and there is only one emotion: super happy. So how can you combat the social obligations, cope with the year-end sense of disbelief that you are still dealing with infertility, and bust the holiday myth?
Protect yourself and your relationship with your partner first. Talk with each other and plan. Decide what you will attend and for how long you plan to stay. Have a physical cue for your spouse or friend that will let them know from across the room that you have had enough. Remind yourself that the questions from people you rarely see are simply efforts to start a conversation, so rather than dreading the inquisition, turn the table and ask the questions. Ask about recent events, movies, books, jobs, travel, and hobbies. The more you ask, the less you have to talk. Call before attending to find out if the event will have Santa pictures, a children’s choir, or if more people are bringing kids than not. Avoid what you need to. Pleasing others is fine until it makes you feel miserable. Ask yourself, would your host want you to feel miserable? Depending on who it is, perhaps you can explain why you don’t intend to make it this year. Don’t let guilt guide you, go easy on yourself, and practice saying no in order to gain some peace for yourself.
Remind yourself that you have a right to your feelings. It is okay if you feel angry, sad, annoyed, anxious, or anything else. Just because there are holiday parties, church services, shopping sprees, and tons of food does not mean that all of those difficult feelings will disappear. It is not a realistic or fair expectation to think you will magically feel great. Give yourself time to grieve, to feel, and take one day at a time.
Finally, have a realistic outlook and be gentle with yourself. Plan something that is just for the two of you that safeguards you from child-topic discussions or exposure. Look for adult-only events around town. Remember, this year may not feel as years in the past. It may not be easy to enjoy the holidays this year because of everything else you are doing, but you won’t have bad holidays forever. Infertility and family building is a phase of life. A hard one for sure, but a phase—the way you feel today will not continue indefinitely. There is resolution. So in the meantime, take care of yourself with healthy habits, a plan for marital strength, and personal boundaries. Remember that even Normal Rockwell did not live a Norman Rockwell painting’s idealized life. In fact, a colleague once told him, “you paint your happiness because you do not live it.”
This holiday season; be sure to take charge of your peace, happiness, and perspective. I wish you the best!
Phyllis Martin is a Licensed Professional Counselor and Infertility Specialist available to current patients, as well as those considering infertility treatment and who have undergone treatment. Click here to view the support group meeting schedule or here to contact Ms. Martin.
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