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October 21, 2013 | Posted By Paul Burcher, MD, PhD

The lay press has reported on two stories this week that both relate to “designing babies,” although only one of these reports is about producing “designer babies.”   The two new technologies, neither yet utilized in a human population, raise different ethical questions, but I, for one, am more troubled by the prospect of a “designer baby” than I am by the possibility of designing, or creating an embryo, free of its mother’s mitochondrial disease.

National Public Radio (NPR) reported on the advances in treating mitochondrial disease with its story that embryologists are now capable of creating an embryo with maternal DNA but with another woman’s mitochondria, thus allowing women with serious mitochondrial diseases to have healthy offspring.  The ethical issues are twofold.  This would be the first time we would change the genetics of an embryo, and this change could be passed on to its offspring as well (but only to female offspring because mitochondria are passed along the maternal line by way of the mitochondria in the ovum).  Some ethicists have argued that manipulating the genetics of the human genome in a transmissible way is a “bright line” that should not be crossed because if the procedure created any new genetic mistakes, these too would be heritable.

The second ethical issue is that the child could be understood as having the DNA of three parents because he or she would have the mitochondrial DNA of the ovum donor while having the nuclear DNA of his or her parents. As NPR decribes, Ronald Green, a bioethicist at Dartmouth College, expressed concerns that the offspring could have identity issues because they are the genetically related to three parents, not two.

The first issue of permanently “fixing” genetic diseases is one that I imagine causes little ethical worry among clinicians.  Having seen patients suffer with cystic fibrosis, sickle cell disease, and other painful, life shortening ailments, we would like to see these diseases eradicated by some means other than eliminating all the fetuses afflicted with these genetic errors.  If we could allow couples to create healthy fetuses who would in turn be able to have healthy children, we would not be creating Frankensteins so much as we are curing a disease by attacking it at its root cause.  The fear of untoward effects is real, but this is not a new ethical problem or realm for medicine. Like any other treatment, there are potential harms and we need to be vigilant about identifying possible harms, toxicity, or side effects.  We already cause secondary cancers by treating cancer, yet no one suggests that the genetic errors induced by our chemotherapy has crossed a “bright line.”

Furthermore, we don’t think, for good reason, of our mitochondrial DNA as being part of “who we are” in the same sense as our nuclear DNA.  Having the genetics of a third parent only in our mitochondria is too abstract a concern to cause serious issues for the children that could now be born healthy if this technology was used.  While mitochondria are crucial to our health, our personal characteristics are not determined by these little power generating organelles.  But it is the intentional manipulation of these personal characteristics that the second report on genetics described this week, and this is the story that I find more ethically disturbing than the quest to treat mitochondrial disease.

23andME, a for-profit company that offers whole genome sequencing, recently received a patent on technology that could be used in an infertility clinic to select a donor that is most likely to produce an offspring with characteristics chosen by the prospective parents. Bioethicists have already responded that this is an effort to create “designer babies.”  Unlike the report discussed above, 23andMe is not tampering with DNA. In fact, after testing the maternal and paternal DNA, they can only predict the likelihood of any given phenotypic trait. But here is a “bright line” that I do believe we should not cross—the difference between treating disease and “shopping for a child.” Some have argued that the line between disease and undesirable phenotypes is also somewhat gray, and while I am willing to acknowledge this to some extent, picking hair color, height, intelligence, or musical ability is not within this zone of controversy. Many of us have a visceral reaction against this proposed intervention, but let me offer one reasoned argument as well.

Harvard philosopher and ethicist Michael Sandel has argued that the ability to create designer children would fundamentally change the nature of having children.  Children are gifts that we cannot design or control (as every parent quickly realizes).  As Sandel writes, treating disease and designing children are fundamentally different, “The problem lies in the hubris of the designing parents, in their drive to master the mystery of birth. Even if this disposition did not make parents tyrants to their children, it would disfigure the relation between parent and child, and deprive the parent of the humility and enlarged human sympathies that an openness to the unbidden can cultivate. To appreciate children as gifts or blessings is not, of course, to be passive in the face of illness or disease. Medical intervention to cure or prevent illness or restore the injured to health does not desecrate nature but honors it.”  

Clinicians were unfortunately involved in eugenic efforts during the last century in both America and Nazi Germany.  We should not make this mistake again.  It is our mission to treat disease, and relieve suffering.  It is not our mission to make the human race more perfect.  

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

1 comments | Topics: Eugenics, Genetics

Comments

James Finnerty, M.D, M.A

James Finnerty, M.D, M.A wrote on 10/21/13 8:47 PM

Hi Paul,
A wonderful analysis into the realm of genome sequencing. Can we add this to the information that we give to the HCS student Ob/Gyn group for our discussion sessions?
Jim Finnerty

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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