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An evolving landscape: reproductive genetics, new technologies and health care over the next decade

An evolving landscape: reproductive genetics, new technologies and The rapid advancement of reproductive science, fueled by lifestyles. Personalized treatments raise concern, such major events as the completion of the human genome however, about higher costs and lack of access to project in April 2003 and marked by technologies such as those who cannot afford them. The trend toward preimplantation genetic diagnosis (PGD), has brought a sea privatized medicine also places increased burden on of change in health care that has already begun to impact our individuals rather than fostering a system of health lives. And, for all of the benefits and risks involved, care promotion for all. And, finally, new research reproductive genetics will continue to influence health care using race as a genetic category and the accom- in significant ways over the next decade. The swift growth in panying development of pharmaceuticals patented these new technologies calls for reproductive health and marketed to race-specific groups [such as providers to thoroughly educate themselves, to better isosorbide dinitrate/hydralazine (trade name: understand implications for health care practice, to advocate BiDil), a Food and Drug Administration (FDA)- for clear safety measures to ensure the health and well-being approved drug to treat heart failure specifically in of those who use these technologies and to advance policies African Americans] have the potential to revive biological theories of race . These theories have Advancements in genetics generally, and in reproductive long been discredited, including by the Human genetics specifically, bring with them a host of ethical, legal Genome Project itself, and would create false and social concerns that the reproductive health care notions about the cause of health disparities community will face for years to come.
(3) Brave new world or back to the basics? Essen- As a result, we are facing three major changes: tially, both. The intricacies we learn from geneticsresearch and the nuanced reproductive health (1) From macro to micro: Changing treatment technologies that emerge will make basic, high- approaches. For general medicine, the historical quality patient care and counseling more important process of patient treatment will change from than ever. With new technologies developing faster current methodologies to more focused, symp- than the implementation of safety requirements, toms-based treatment and prevention . At the the need for research on the impact of these same time, an increased focus on genetics as the technologies on health and society is critical.
basis of disease could lead to an unfortunate Reproductive health professionals will need to unintended outcome: due to distraction, far less assure that women retain control of their repro- attention may be paid to social and environmental ductive decision making by having as much factors that cause or contribute to medical condi- evidence-based information as possible.
tions The implications for the field of assistedreproductive technologies (ART) are likely to be With all these new developments, two of our core changes in focus from a general desire for healthy principles as reproductive health professionals will still outcomes to addressing ethical concerns, such as remain fundamentally the same over the next decade: sex selection and the increase in screening for excellent patient care and counseling are essential, and reproductive health advocacy is the key to healthy (2) Pharmacogenetics. New genetics research gives us the potential to better understand how people Patient care and counseling: As individuals and couples process medications, chemicals, hormones and face decisions about whether to use genetic testing and ART, other agents, which raises the possibility of more practitioners will be ever more challenged to provide targeted treatment strategies that involve custo- comprehensive and unbiased counseling for women who mized medicines, alternative therapies and healthier are pregnant or wishing to become pregnant.With the 0010-7824/$ – see front matter 2008 Elsevier Inc. All rights reserved.
Editorial / Contraception 78 (2008) 433–435 availability of prenatal, prepregnancy and preconception realistic understanding of how successful fertility interventions testing of fetuses, embryos and gametes for hundreds — and potentially thousands — of genetic conditions, prospective There is currently very little coordinated care between most parents will have to make decisions about whether or not to fertility clinics and other health care providers. Often, when use available genetic testing and what to do when they fertility treatments have resulted in pregnancy, a woman is receive positive test results. While prenatal testing has been passed off to her obstetrician/gynecologist with little to any used for decades and providers have long counseled their follow-up from the fertility clinic. Providers must do more in patients in this area, they have not often had access to full the future to ensure there is continuity of care and tracking of information about raising a child with a disability. Medical education programs will need to incorporate curricula that Advocacy: Although platforms and positions will become involve contact with children with disabilities and their more complex than in the past, advocacy for reproductive families so that providers can more effectively counsel their health rights and justice will be more important than ever patients about the reality of raising a child with a disability.
during the next decade. The basic tenets of reproductive health At the very least, familiarity with appropriate referral and and justice promote the rights of women, men, their families and communities to lead healthy reproductive lives and These technologies are helping countless people build their advance the conditions necessary to exercise them. Already families. At the same time, it is important to remember that the issues have become more complicated and dynamic than ART is an industry that has everything to gain when couples ever with the advent of new reproductive technologies.
choose to use these technologies. Health care providers can be How do we establish policies in the area of reproductive an important source of unbiased information and counseling genetics while simultaneously assuring reproductive auton- for patients who are considering ART and need information omy? For example, while we stand firm on the rights of all about its risks, benefits and success rates in order to make as women to choose whether or not to have a child, to continue wanted pregnancies to term and to access legal and safe Women and men struggling with infertility often undergo abortions, how do we answer questions such as, “Does the expensive and potentially unnecessary treatments, the long- right to choose whether or not to have a child extend to the term health effects of which are unknown. The increasing right to choose the characteristics of a child (e.g., choosing popularity of technologies like in vitro fertilization raises some the child's sex or, in the future, possibly choosing eye color concerns that women are not receiving enough information and or other genetically determined traits)?” counseling. Reproductive health care providers can — and Specific advocacy issues related to ART and reproductive should — provide much needed, unbiased information about genetics need to be addressed over the next decade. Some of the risks and benefits of the procedures and process involved.
Patients need thorough information about the egg retrievalprocess, whether they are having eggs harvested for themselves • Lack of access to ART due to high costs or or for the benefit of others . They also need to know about discriminatory policies [e.g., state or clinic restrictions the risk of multiple births and the unknowns about long-term on use by single women and men or lesbian, gay, health effects of hormone injections.
bisexual, transgender, queer, questioning and intersex Patients need evidence-based information about whether medical intervention is likely to help them conceive a • Determination of what should be covered in public and pregnancy. For example, recent research indicates that the live birth rate for those who continued to try to conceive • Disputes over control and use of frozen embryos naturally and those who opted for common first-line treatments such as clomiphene (Clomid) and unstimulated • Assessment of whether payment to egg donors and intrauterine insemination was the same. However, the women in the “trying naturally” category expressed the least amount • Ethical and clinical issues related to “reproductive tourism” of satisfaction with their course of action While patients (in which individuals or couples travel abroad for fertility struggling with infertility begin to educate themselves about services due to lower prices or lack of regulation) the common medical interventions their peers are opting for, • Addressing federal bans and restrictions on embryo- health care providers can help patients manage their related research and securing funding for research on expectations for success and help them understand when reproductive genetics, the long-term health effects of and if medical intervention is an appropriate next step.
Fertility clinics are also at liberty to define their success rates in very selective ways For instance, it is easier to achieve Those working within the progressive advocacy landscape high pregnancy rates when you limit your clientele to those are increasingly challenged to develop a nuanced understanding who have the best chances of conceiving and maintaining a of the benefits and risks of reproductive genetics, and they will pregnancy. Routine health care providers, who already have a have the opportunity over the next several years to advocate for preexisting relationship with patients, can help them gain a policies that promote reproductive well-being for all individuals Editorial / Contraception 78 (2008) 433–435 and communities. Reproductive health care providers can help shape policies that respect and protect patients' rights while still ensuring men, women and families benefit from the advances in reproductive technologies and genetics research. And, while the reproductive health care community faces this changing world of reproductive science, they can do much to help patients understand their options and make the best decisions [1] National Human Genome Research Institute. All About The Human Association of Reproductive Health Professionals [2] GeneticHealth.com. Genetics and the Future of Medicine. [3] Roberts D. Race and the Biotech Agenda. [5] Reproductive Health Technologies Project. Ovarian Stimulation and Association of Reproductive Health Professionals Egg Retrieval: Overview and Issues to Consider. [6] Bhattacharya S, Harrild K, Mollison J, et al. Clomifene citrate or unstimulated intrauterine insemination compared with expectant management for unexplained infertility: pragmatic randomized con- [7] IntegrMed, Fertility Network. Making Sense of IVF Success Rates.

Source: http://www.generations-ahead.org/files-for-download/articles/AnEvolvingLandscape.pdf

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