| For genetic analysis related to breast cancer and | | | | can regarding the potential health of her |
| Huntington's disease, it is likely such investigations | | | | baby-to-be. Her fetus carries an HTT anomaly |
| are initiated for an asymptomatic patient with a | | | | suggestive of Huntington's disease onset after |
| relevant family history. Testing for Down's | | | | age 40. She has herself tested and learns she |
| syndrome is routine for pregnant women older | | | | does not carry the gene. As a result of this |
| than 35. With the advent of maternal serum | | | | process, she has gained private medical |
| markers, aggressive obstetricians may | | | | information concerning her partner. He will develop |
| recommend such screening to all their patients. | | | | Huntington's disease. Is she obligated to share this |
| The right to privacy - closely related to the | | | | information? There are implications for his parents |
| bioethical principle of autonomy - is the main | | | | and his children from a previous marriage. |
| concern in genetic testing. With whom are the | | | | Also, should she abort the fetus? If she chooses |
| results to be shared? With testing for BRCA | | | | to have this child, is she imposing an unfair burden |
| mutations, a mother or a daughter may learn she | | | | on society? Who will bear the costs of care for |
| carries BRCA1 or BRCA2. Knowledge of this result | | | | her child after the disease manifests? Might these |
| might be valuable to the daughter or mother, | | | | resources have better uses elsewhere? Bioethical |
| respectively. But the mother, for example, may | | | | principles of justice and autonomy are in conflict. |
| wish to keep the results private. She doesn't | | | | Would she be acting irresponsibly if she chooses |
| want her husband to know and fears her | | | | to have additional children with her partner? Each |
| daughter may share the news not only with | | | | child would have a 50% chance of developing |
| family but also with friends. | | | | Huntington's disease. Such actions would be ethical, |
| In some cases the mother and daughter share a | | | | as decades of healthy existence would be |
| family physician. Is that doctor obligated to | | | | preferable to never having been born at all.1 |
| communicate critical information to the daughter, | | | | With the prenatal detection of trisomy 21, what |
| even though such action will violate the mother's | | | | are the physician's obligations? Should she |
| right to privacy? The principles of autonomy and | | | | recommend termination of the pregnancy or |
| beneficence are in conflict in such a scenario. Does | | | | should she also point to the many persons with |
| the mother have an obligation to communicate | | | | Down's syndrome living fruitful lives? On another |
| the information to her daughter? Her personal | | | | matter, is such prenatal testing for all pregnant |
| autonomy is at odds with her moral obligation to | | | | women an appropriate use of scarce resources? |
| care for her children. | | | | These are a few of the many ethical questions |
| Similarly a parent, whose own mother had | | | | that confront individuals and physicians on a daily |
| Huntington's disease, chooses to be tested when | | | | basis. Many more will arise as technology |
| he is 40 years old. He learns he has an excessive | | | | continues to advance. The fields of bioethics and |
| number of CAG repeats in the HTT gene on the | | | | jurisprudence need to be proactive and deeply |
| short arm of chromosome 4. He will certainly | | | | consider these matters in advance of further |
| develop Huntington's disease. Is he obligated to tell | | | | scientific and technological developments. |
| his children? Is his physician obligated to share the | | | | 1See, for example, Robertson JA: Children of |
| information? Again, the relevant bioethical principles | | | | Choice. Freedom and the New Reproductive |
| are in conflict. | | | | Technologies. |
| A mother-to-be wishes to learn as much as she | | | | |