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Lunshof, Jeantine

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Lunshof

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Jeantine

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Lunshof, Jeantine
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Now showing 1 - 5 of 5
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    Publication
    Our genomes today: time to be clear
    (BioMed Central, 2013) Lunshof, Jeantine; Ball, Madeleine
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    Harvard Personal Genome Project: lessons from participatory public research
    (BioMed Central, 2014) Ball, Madeleine; Bobe, Jason R; Chou, Michael; Clegg, Tom; Estep, Preston W; Lunshof, Jeantine; Vandewege, Ward; Zaranek, Alexander Wait; Church, George
    Background: Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an ‘open consent’ framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Discussion Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. Summary We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants.
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    Publication
    Human germ line editing—roles and responsibilities
    (Higher Education Press, 2015) Lunshof, Jeantine
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    An unbiased index to quantify participant’s phenotypic contribution to an open-access cohort
    (Nature Publishing Group, 2017) Chan, Yingleong; Tung, Michael; Garruss, Alexander; Zaranek, Sarah W.; Chan, Ying Kai; Lunshof, Jeantine; Zaranek, Alexander W.; Ball, Madeleine P.; Chou, Michael; Lim, Elaine T.; Church, George
    The Personal Genome Project (PGP) is an effort to enroll many participants to create an open-access repository of genome, health and trait data for research. However, PGP participants are not enrolled for studying any specific traits and participants choose the phenotypes to disclose. To measure the extent and willingness and to encourage and guide participants to contribute phenotypes, we developed an algorithm to score and rank the phenotypes and participants of the PGP. The scoring algorithm calculates the participation index (P-index) for every participant, where 0 indicates no reported phenotypes and 100 indicate complete phenotype reporting. We calculated the P-index for all 5,015 participants in the PGP and they ranged from 0 to 96.7. We found that participants mainly have either high scores (P-index > 90, 29.5%) or low scores (P-index < 10, 57.8%). While, there are significantly more males than female participants (1,793 versus 1,271), females tend to have on average higher P-indexes (P = 0.015). We also reported the P-indexes of participants based on demographics and states like Missouri and Massachusetts have better P-indexes than states like Utah and Minnesota. The P-index can therefore be used as an unbiased way to measure and rank participant’s phenotypic contribution towards the PGP.
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    Addressing the ethical issues raised by synthetic human entities with embryo-like features
    (eLife Sciences Publications, Ltd, 2017) Aach, John; Lunshof, Jeantine; Iyer, Eswar; Church, George
    The "14-day rule" for embryo research stipulates that experiments with intact human embryos must not allow them to develop beyond 14 days or the appearance of the primitive streak. However, recent experiments showing that suitably cultured human pluripotent stem cells can self-organize and recapitulate embryonic features have highlighted difficulties with the 14-day rule and led to calls for its reassessment. Here we argue that these and related experiments raise more foundational issues that cannot be fixed by adjusting the 14-day rule, because the framework underlying the rule cannot adequately describe the ways by which synthetic human entities with embryo-like features (SHEEFs) might develop morally concerning features through altered forms of development. We propose that limits on research with SHEEFs be based as directly as possible on the generation of such features, and recommend that the research and bioethics communities lead a wide-ranging inquiry aimed at mapping out solutions to the ethical problems raised by them. DOI: http://dx.doi.org/10.7554/eLife.20674.001